Tuesday, December 31, 2013

Thief steals special iPad belonging to child with Down syndrome

from WPXI:
Several precious items were stolen from a Washington County family, but one thing in particular will be very difficult to replace.
Among the stolen items was a special iPad belonging to a boy with Down syndrome who has a tough time communicating, Channel 11's Cara Sapida reported.
The thief broke into the Miller family's home just a few days before Christmas and took a laptop, the iPad and even little Elijah's backpack that had in it his folders from school. It's not having the iPad, however, that concerns the family most.
"I thought, 'Oh my god, Elijah's iPad,'" the child's mother, Michele Miller, recalled. "I run in the living room, (and) it's gone. I started crying. I didn't know what to do."
The iPad was specially given to Elijah by the Charleroi School District to help him communicate. The family said they believe the thief would only need a quick look to realize that it belonged to a special boy.
"(It has) bright blue bumper foam pad with a handle," Michele Miller pointed out. "Whenever you turn it on, you can see his pictures, all the sign language apps and other things for a child to learn and communicate."
Elijah's big brother Samuel had a message for the thief.
"Whoever took it, I hope they return it," the 9-year-old said. "Because that isn't just right. It isn't right."
The laptop is missing an F5 key. If you recognize any of those items, you are encouraged to contact Charleroi Police.

Man with Down syndrome receives over 1,800 Christmas cards

from My Fox 8 Piedmont News:
NEW YORK — Not a hippopotamus. Not his two front teeth. All Elliot Shirback wanted for Christmas this year was cards.
It was a wish heard around the country.
A houseful of cards poured in for the 25-year-old New York man who has Down syndrome, according to his mother’s Facebook pages.
More than 1,800 have arrived, coming from nearly every state, CNN affiliate YNN reported.
“I’m, like, blessed right now,” Shirback told the network.
It all started because of his mother, Anne Daggett.
Shirback was sad one day. She wanted to make him feel better so she asked what he wanted for Christmas.
“A hundred Christmas cards,” he said, according to his mother’s Facebook post. “I said it might be a little too late for that and people have much things on the plate,” his mother wrote, “If anyone can send him a card He would love it!!!!!”
She included the address. Friends and family put the word out on Facebook and it exploded from there.
“I thought maybe he might get 35 cards at best. Next thing I know, it’s like a flurry and gone viral,” Daggett told YNN.
Their home is now covered in cards. One reads: “Elliot, you are loved.”
“It makes me happy,” he said. “It’s like a gift, like somebody loves and cares about you.”

Monday, December 30, 2013

family trying to raise awareness about son's rare brain disease

by Leonard Hayhurst from the Conshocton Tribune:
KEENE — Wyatt Guilliams, 11, likes taking pictures and photos on his iPad, revels in playing games on his Xbox, and says he can’t wait for Christmas to come.
That’s all typical for a boy his age, but what isn’t typical for the Warsaw Elementary School fourth-grader is his duel with a rare brain disease called moyamoya syndrome.
Wyatt has Down syndrome and related growth and development problems. It was through medical tests for his low growth hormone levels that the moyamoya, which causes strokes because of blocked arteries at the base of the brain, was determined in August.
Wyatt had surgery to restore blood flow in October, but it will be about another six months before it’s known whether surgery was successful. If not, another surgery might be needed.
Right now, Wyatt seems to be his usual self, said his mother, Tammy Guilliams. Wyatt has returned to school but can’t participate in gym or recess because he has to be careful with physical activity.
Guilliams is shifting gears to focus on awareness of the disease and has started a Facebook page to do so, called Wyatt’s Battle. Guilliams also has made fliers about the disease and distributed them at Wyatt’s school and is a member of a moyamoya support group on Facebook.
“There’s so little knowledge of moyamoya,” Guilliams said. “We’re all trying to get knowledge out there so (medical facilities) can get research funding and more training. We hope they can find something to cure it or something to fix it that’s a guarantee.”
According to the National Institute of Neurological Disorders and Strokes, moyamoya can be fatal if left untreated. Victims will experience mental decline and multiple strokes as blood vessels continue to narrow. Studies show moyamoya affects about 1 in every 2 million people in the United States. The name is Japanese for “puff of smoke,” which describes what the tangled, small vessels look like that develop in the brain to compensate for the blockage.
“It’s actually the weirdest looking thing,” Guilliams said. “We saw Wyatt’s MRIs, and that’s what they looked like: a puff of smoke.”
Wyatt’s surgery involved taking a blood vessel from his face and attaching it to his brain to grow new arteries to bypass the blocked ones. It was an eight-hour surgery.
“The neurosurgeon said after the surgery (Wyatt) was so far ahead of the game. He came out of surgery and all he wanted to do was eat,” Guilliams said with a laugh. “They were hooking him up to things in intensive care, and he was saying, ‘Where’s my mom, where’s my mom?’ and I said, ‘I’m right here.’ I squeezed around all the doctors and nurses and he said, ‘See mom, I tell you I wanted breakfast, and now it’s supper time.’ ”
Guilliams said they were lucky a neurosurgeon, Lance Governale, at Nationwide Children’s Hospital in Columbus had training in the technique from when he worked at Boston Children’s Hospital. Guilliams said she has found other families online who have to give up almost everything they own so they could travel to Boston or Stanford, Calif., for treatment.
It brings tears to her eyes to think of the people who supported Wyatt and the family — which includes Wyatt’s father, Mike Guilliams, and his older brother, T.J. Guilliams — during his hospital stay. A benefit auction and card shower were organized by Kenny and Marie Roberts. The Coshocton Army Navy Garrison donated its facility to host the auction.
Tammy Guilliams said the family received more than 50 cards, many from people they didn’t know. Several of the cards contained money, and Wyatt was able to go on a celebratory shopping spree after being released from the hospital. Other donations helped the Guilliamses pay bills, travel back and forth, and buy needed essentials while Wyatt was at the hospital.
“I can’t even express the gratitude we have for the people in this community. You hear so many bad things about Coshocton, but when it comes down to it, the people in Coshocton are great,” she said. “People we’ve never met, you can’t believe how much they care.”

Sunday, December 29, 2013

Dismissal motion says Md. man with Down syndrome was trespassing when he died in custody

by David Dishneau from the Daily Journal:
HAGERSTOWN, Maryland — A man with Down syndrome who died in the custody of three Frederick County sheriff's deputies contributed to his own asphyxiation by resisting arrest after refusing to leave a theater seat for which he had not paid, the officers said in a federal court filing Monday.
The deputies, who were moonlighting as mall security officers, asked a judge to dismiss a wrongful-death lawsuit filed by Robert Ethan Saylor's parents, contending that they, too, were at fault for putting their son in the care of an aide who couldn't control his angry outbursts.
The motion, filed in U.S. District Court in Baltimore, is the first detailed response from the deputies to the family's allegations that the officers and Regal Cinemas Inc. were grossly negligent in the Jan. 12 confrontation at the Westview Promenade shopping center near Frederick.
The officers were cleared of criminal misconduct by a Frederick County grand jury in March. They and Knoxville, Tennessee-based Regal have denied any civil liability for Saylor's death.
Saylor, who had an IQ of 40 and weighed 294 pounds, died with a fractured larynx after the deputies tried to escort him in handcuffs from an auditorium where he was awaiting a repeat viewing of "Zero Dark Thirty." Saylor had re-entered the theater while his aide went for her car. The theater manager had summoned the deputies.
Baltimore attorney Daniel Karp, representing Lt. Scott Jewell, Sgt. Rich Rochford and Deputy First Class James Harris, wrote that the deputies responded reasonably to an apparent case of trespass and theft by a subject who then resisted arrest.
"His decision to struggle with the deputies when they seized him by the arms to forcibly remove him from the theater clearly exposed him to a risk of injury," Karp wrote.
He suggested that Saylor's parents, Patricia and Ronald Saylor, had a duty to either supervise their son appropriately in public places or delegate that responsibility to someone "who would be able to control him adequately, so that he did not engage in conduct detrimental to other persons or to himself, including criminal conduct."

Saturday, December 28, 2013

Can someone with Down syndrome be a godparent?

from Catholic Answers:
Hello, I have never used this site before, perhaps this question is answered elsewhere but I could not find it.
My husband has a cousin with Down syndrome. She is high-functioning and it seems to me that she has "reached the age of reason" despite her condition, but then I'm not clear on how that is defined.
We would love to ask her to be a godmother for one of our children. She goes to church with her parents and siblings, loves God in her innocent and joyful way.
We would also have a godfather and would make sure that godfather is also a practicing Catholic in good standing.
I am thinking that the answer is yes, because one sponsor alone is sufficient and therefore the godfather would already fulfill that requirement, right? But would the answer change if she were to be the only godparent?

Friday, December 27, 2013

One of the UK's oldest men with Down syndrome celebrates 70th birthday

by Joanna Morris from The Northern Echo:
One of the UK’s oldest men with Down syndrome is today (Monday December 23) celebrating his 70th birthday.
Micky Neal will be surrounded with family and friends as he enjoys a tea party at his supported accommodation in Darlington.
The birthday is a significant milestone for Mr Neal and his family, who never expected to see him outlive his devoted parents, Ruth and Tom.
The eldest of five children, he was brought up in a time when Down syndrome sufferers were usually institutionalised and expected to die at a young age.
His mother Ruth refused to put him into a home and he was brought up alongside his siblings in a supportive and loving family – something his brothers and sisters feel has contributed to his long and happy life.
His brother Chris Neal and sisters Rosetta Forster, Fiona Neal and Debbie Allinson said he has brought them “nothing but joy” over the years.
Mrs Allinson said: “People with Down syndrome are no different to anybody else, they are loving people who have feelings and the same needs as anybody else.”
Despite the onset of dementia and his advancing age, Mr Neal is still a lively character who is known for his practical jokes.
Mrs Forster said: “He is always playing tricks. At the home he’s in, he’s left banana skins outside the office doors.
“He has a great sense of humour, he loves Ant and Dec and Carry On films.”

Thursday, December 26, 2013

A Christmas gift one Denton family won't soon forget

by Todd Unger from UFAA 8:
DENTON — It is a Christmas gift that one family still can't believe.
"It's a big change from last year," said Stephanie Perry.
On Sunday afternoon, the Perry family got a first look at the handiwork of about 30 volunteers who spent the weekend redoing part of their house through a new charity called Sunshine Spaces.
The Perrys' youngest daughter, Brielle, has both Down syndrome and cancer. Through $6,000 of private donations — and even more donated materials and man hours from Denton businesses — Sunshine Spaces was able to make over the bedrooms of Brielle and her older sister, Reese.
A family room was also outfitted with new paint, a popcorn machine and more.
"This has completely restored our faith in everybody," said Ryan Perry, Brielle's dad.
Erica Jones, who helped start Sunshine Spaces with her husband, said the decision to help the Perrys was an easy one.
"They are such a good family," she told News 8.
Brielle's cancer is in remission, according to her mom. But there could be more treatment necessary in February.
News 8 first profiled the family's courageous battle earlier this year.
The couple says their family is overjoyed at the gift during a time of year when it matters most.
E-mail tunger@wfaa.com

Wednesday, December 25, 2013

Santa needs some help getting to Erika's house

by Matt Harper from the Daily Record:
Erika loves Santa Claus, but she thinks Santa can’t come to her house anymore.
Erika (Case J-1) is a 25-year-old girl with Down Syndrome who is faithfully cared for by her mother, June. June spends every day caring for her daughter and cannot work as a result. Though she shows her daughter an immense amount of love, they get by on very little money, which makes it impossible for June to afford gifts for Christmas. She is desperate to show Erika that Santa can still visit them, but that won’t happen without help from Operation Holiday and Daily Record readers.
Since 1971, Operation Holiday, a non-profit organization sponsored by the Woman’s Club of Morristown and the Daily Record, has raised over $2.7 million, and last year donations totaled more than $132,000. As a result, with the help of local individuals, schools, and businesses, Operation Holiday last year provided more than 450 families and individuals with necessary items they cannot afford and granted some of their very special wishes.
For more than a month, each day you have learned about those referred to Operation Holiday by more than 20 social service agencies in Morris County, many of whom find themselves all alone during the holiday season. In these last few days before Christmas, the Daily Record will continue to share their stories with you and ask for your donations to do what we can to help lift each other up in the spirit of the season. Once donations are received, volunteer shoppers purchase needed items for delivery to the families in time for the holidays.
Without the help of the hundreds of generous readers who reach deep in their pockets each holiday season and donate to the campaign, we cannot continue this proud tradition.
Contributions to this year’s Operation Holiday campaign can be mailed to The Woman’s Club of Morristown, 51 South St., Morristown, N.J. 07960. Donations are tax-deductible, and every penny goes to help the needy of Morris County. All administrative costs are covered by the sponsors, and all work is done with the help of volunteers. Any inquiries regarding Operation Holiday, including interest in helping to cover a family’s needs, can be directed to OperationHolidayNJ@gmail.com.
Erika would love to receive a portable CD player and CDs of children’s music, as well colorful picture books. She could also use a warm blanket, especially one featuring any Nickelodeon characters. June would appreciate receiving turtlenecks in size large and a crockpot and gluten free cookbook to prepare gluten free meals for Erika. A gift card to Shoprite to purchase gluten free food would be especially helpful.
Jill (Case T-27) is a single mother who suffers with anxiety and mental illness. Her daughter, Autumn, 9, is dealing with depression and other difficulties despite her young age. They live together in a small apartment and do their best to get by on very little. Jill would love to make Christmas special for Autumn, but can’t do it on her own. Autumn needs tops in size 10-12, jeans in size 14 and a winter jacket in size large. She would love to receive age-appropriate books, dolls and anything related to One Direction. Jill could use sweaters and winter coat in size extra large, pants in size 20-22, sheets for a full size bed and warm blankets. They could also benefit from receiving gift cards to ShopRite and Walmart to purchase food and household supplies.

Tuesday, December 24, 2013

Young man with Down syndrome gets big surprise

Young man with Down syndrome gets big surprise, Twenty-year-old Ryan Holcombe has Down syndrome, and the thrilling moment when he read his ...

Monday, December 23, 2013

Family Claims Air Canada Abandoned Man With Down Syndrome at Vancouver Airport

by Katie McFadden from Travelers Today:
A family claims that an airline did not help their son with Down Syndrome as they promised to.
John 'JJ' Ross, 21, is not new to flying, but he was never treated the way Air Canada treated him during a recent trip from Portland to Vancouver, British Columbia, Canada. He was flying to see his sister in Vancouver, KPTV reports.
Ross usually flies from Portland to Seattle and his sister picks him up, but  his parents decided to fly him right to British Columbia this time as Air Canada told them that someone would stay with him until his sister met him. Ross' parents and his sister called Air Canada several times to ensure that Ross wouldn't have any problems before he flew.
"I felt good about putting him on that airplane," Connie Ross told KPTV. However that changed when JJ landed in Vancouver.  Connie wrote a letter to Air Canada saying that she believes her son was taken to the baggage area after the flight but he was left alone at customs.
"I went into the hall. I didn't know [if I was] going to find help. [I] went to a security guard to help me," JJ said.
When JJ got out of customs, Connie says her son had no idea where he was or where he had to go. He wandered around the airport for an hour before calling his sister. His sister told him to talk to someone. The person that helped him was from customs and not the airline.
"I think the word is just simply disappointed," John Ross, JJ's father told KPTV. "They didn't do their job. They didn't do what they promised they would do."
The Ross' say Air Canada offered an apology but they still want an explanation for why no one stayed with their son. They're hoping that the airlines follows policies as promised and hopes that no one will go through what their son did.
"Be aware of the people around you," Connie Ross said. "We would love all the airlines to provide support to people with disabilities to be safe. That's so they have an opportunity to travel and be part of society."
Air Canada released a statement to FOX 12 about the incident, saying "This was an unfortunate incident, and we have been in touch with the customer. We have procedures in place to assist customers with special needs, and we are investigating how this situation arose," said Peter Fitzpatrick, Air Canada.
Ross is set to spend Christmas in Canada and will return home to Oregon next weekend. The Ross' say they will pick up their son by car for the trip home.

Sunday, December 22, 2013

Adult tricycle tops daughter with Down syndrome’s Christmas wish list

Down syndrome, a genetic condition that causes delays in physical and intellectual development, is the most frequently occurring chromosomal disorder, according to the National Association for Down Syndrome.
Individuals affected have 47 chromosomes instead of the usual 46; however, they’re more like others than they are different, blessed with talents and gifts.
A mother hopes a “Mailbag Santa” will offer the gift of mobility, and perhaps schedule elves to deliver.
Would love to get around
“I have a 27-year-old Down syndrome daughter who has asked for a bike (adult tricycle, three-wheeler) for Christmas,” says Betty J., of Nashua (LTR 3,086). “This is something that I cannot afford at this time. I would like to know if anyone has one that they would be willing to donate to her.”
While some adults with Down syndrome may require a more structured environment, many others are capable of working and enjoying activities offered in the community. Accessing resources and services is sure to be easier, more comfortable and approached with more confidence for those physically challenged with the aid of an independent means of transportation.
If you have an adult tricycle in good condition that is no longer being used, here is an excellent opportunity to pass it along. Ho! Ho! Ho! To make this “a go” and set the wheels in motion, call Betty at 233-5648.

Saturday, December 21, 2013

Support for ABLE Act Continues to Grow

from PennsNews.com:
WASHINGTON, D.C. – Today, support continued to grow for the Achieving a Better Life Experience Act (ABLE Act – S. 313/H.R. 647), introduced by U.S. Senators Bob Casey (D-PA) and Richard Burr (R-NC), bringing the total number of co-sponsors in the Senate to 60 members.  Introduced in the 113th Congress in February, this bill would provide an improved quality of life for individuals with disabilities through tax-free savings accounts.

“This is a significant step forward for the ABLE Act and for the families of children with disabilities,” Senator Casey said. “Now that this bill has 60 cosponsors, I’m urging the Senate to take action on it in the new year. The fact that only 6 bills in all of Congress have this many cosponsors is a sign of the overwhelming support for this effort to make a major difference in the lives of these families.”

“The ABLE Act is a commonsense piece of legislation that allows families of disabled children to have the same access to tax preferred savings accounts as the parents of college-bound kids,” Senator Burr said.  “I am very excited that we now have 60 Senators on board and can hopefully expect swift movement on the Senate floor to send this bill to the President.”

The legislation would amend Section 529 of the Internal Revenue Service Code to 1986 to allow use of tax-free savings accounts for individuals with disabilities. The bill, first introduced in 2006, would ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, medical, and transportation. The bill would supplement, but not supplant, benefits provided through private insurance, the Medicaid program, the beneficiary’s employment, and other sources.

Friday, December 20, 2013

Separating a Son From a Down Syndrome Diagnosis in ‘Raising Henry’

From the NY Times by Susannah Meadows:
Rachel Adams is an Upper West Side intellectual who gave birth to a boy with Down syndrome six years ago. In this era of advanced prenatal screening, the first question more than one friend asked her was: How could this have happened?
On the surface it seemed like an expression of concern. But what it meant was: How could this child have happened?
To Ms. Adams, the idea that her son’s very existence requires an explanation — that he is here because of some failure of medical science — is appalling. Her book is less a memoir about mothering a child with Down syndrome than it is her attempt to set people straight. The syndrome is a disability, as she makes clear, not an illness and certainly not a tragedy.
“Raising Henry” is an important, hopeful book for that reason alone, and it’s easy to be on Ms. Adams’s team. Sometimes, though, you wish she were a more effective captain.
A professor of English and American studies at Columbia, she seems most at home making an argument, drawing on research (especially her own), seeing connections. She observes that in the brainy circles in which she moves, everyone talks about diversity — but how much are differences really valued? “I wonder,” she writes, “whether my friends and colleagues would recognize the value of a child who was slower, less capable and more dependent.”
And while she makes many good points, she leaves her most compelling evidence, her case-closer, largely out of the picture: Henry himself. She writes that her son is separate from his diagnosis, but barely offers a sense of who he is.
One quick glimpse comes midway through the book, when she writes that no genetic test would have told her about the essence of Henry: “I couldn’t have known about his great sense of humor or the sound of his infectious laugh. Or the smell of his hair. The delight he gets from singing along with music or pouring bathwater from one cup to another. His weight on my lap when we’re reading a book together.”
That’s the stuff. Too bad there is so little of it. Comparisons with the vivid characters who populate the 2012 book “Far From the Tree,” Andrew Solomon’s magnificent study of disability and identity differences, are hard to avoid. People like the autistic child who tells his mother “I love you” shortly before she dies, or the woman who starts her own school to meet her deaf son’s needs, make Mr. Solomon’s weighty volume, implausibly, a page-turner.
When Ms. Adams was pregnant with Henry, her second child, she and her husband, Jon, decided to skip an amniocentesis, which would have identified the extra chromosome that causes Down syndrome. She’d had the test during her first pregnancy and was repelled and terrified by the long needle stuck into her abdomen; anyway, an early screening in the second pregnancy suggested that the odds for Down syndrome were just one in 2,000. She doesn’t say whether she would have had an abortion had she known, or what her husband would have wanted to do.
A dispiriting subplot of the memoir is the author’s growing disillusionment with doctors. She comes to trust her own instinct above their advice — and no wonder, given their abysmal bedside manner. For instance, the resident who sews her up after the delivery sprints out of the room faster than you can say “perineum”; she realizes later that he must have known that Henry had Down syndrome but lacked the courage to break the news.
When Henry was 3 days old, a pediatric geneticist used him as a teaching prop for a group of residents: Pointing out a characteristic of Down syndrome, “he reached into the incubator to demonstrate the floppiness of Henry’s limbs by lifting them and letting them drop.” Neither he nor the residents uttered a word to Ms. Adams as they continued on their rounds.
Her obstetrician’s performance was hardly better. Visiting Ms. Adams after the birth, she burst into tears — which, although odd, at least seemed sympathetic. But soon the doctor’s attention shifted to herself. “I went back through all your records,” she said. “I wanted to make sure I didn’t miss anything so I showed them to my colleagues, and everyone agrees there was nothing.”
At that moment, Ms. Adams says, she hated her obstetrician. Later she reconsidered, reasoning that if the doctor had pushed her to have an amnio, she might never have had Henry. She even wrote the doctor a thank-you note.
But the feeling didn’t last. After talking to another mother of a child with Down syndrome who happened to be a patient of the same obstetrician, Ms. Adams realized that those tears were not out of worry for the challenges the new mother faced, but rather out of regret that Henry had come into existence at all.
Ms. Adams never saw that doctor again, but with this book, she gives her a well-deserved piece of her mind.
Susannah Meadows, a regular contributor to The New York Times, is working on a book about people who exhausted traditional medical options and found solutions elsewhere.

Thursday, December 19, 2013

Down but not out

She watches the ‘Asku Laska’ song from the movie Nanban on her iPad and hums along. “Vijay is my favourite actor,” she says and immediately breaks into another song, ‘Vangana Vanakkangana’ from his latest release, Thalaivaa.
The mood is light hearted, as she opens up about her achievements. She has participated in the Special Olympics, acted in a movie, gone ice skating in Kuwait, plays basketball regularly and nurses ambitions of walking the ramp soon.
These may be aspirations common to any young woman, but for 28-year-old Archana Jayaram, who has Down Syndrome, these achievements have greater significance.
“I am a completely healthy, normal and beautiful woman,” she says as she does the catwalk, in her own style. Archana works as an assistant teacher at Sri Prashanthi Academy, a school for intellectually challenged children, and has become a role model even for able children and parents.
This confidence is largely thanks to her mother Annapoorna Jayaram, who runs the school. But the road has not been easy.
Annapoorna first noticed that all was not well with her daughter when she was three months old. Archana was not very responsive, did not have the normal curiosity associated with a toddler and would fall sick often.
“I was in Chennai then, and consulted a doctor for her recurring cold. As the doctor started probing for a few more symptoms, an entirely new revelation came out,” she says. Archana was diagnosed with symptoms typical of Down Syndrome. Annapoorna was shaken. “I was 21 at the time and had heard that this happens to older parents. But I had to start looking forward and look at the positives for Archana,” says Annapoorna.
A few years later, the family moved to Kuwait, where it was hard for Archana to get admission into regular schools. “There were hardly any schools for children with special needs. Working parents, who had children with disabilities, would lock them up in the house and completely isolate them,” she says. As she grew older, people would look at Archana strangely, and some would pass unsavoury comments about her appearance. “I always advised her to ignore those people, as they had no idea what she was going through,” says Annapoorna.
Annapoorna then started her own school in Kuwait, where Archana and other children like her could get together and play for a couple of hours every day.
She also started teaching them the basics of math, languages and fundamentals of other subjects. More crucial life skills such as cognitive, social, gross and motor skills, perception of time and personal hygiene were added to the curriculum as time went by.
Annapoorna then came to Coimbatore in 2006 and started the Sri Prashanthi Academy here. Her husband, P.K. Jayaram joined as a trustee and gives them technical support.
Archana participated in the Special Olympics in Athens in 2011 and bagged a gold and bronze in cycling, competing with 192 other athletes. She has also acted in a movie Indelible, which had inspiring stories of seven achievers with Down Syndrome. Her younger sister, Ramya, who is pursuing her Master’s in Early Childhood Unified from Kansas University, dotes on her and regularly chats with her over Skype. Archana has also been on the Skycoaster, an extreme amusement ride in Denver.
“She can whip up a tasty biryani, tomato rice and make soft idlis too. I have set up a store for her, where she sells nightwear to ladies. She can now recognise different patterns in each dress and calculate money,” Annapoorna says with pride.
Archana sinks into her iPad again, singing along to ‘Thaniye Thananthaniye’ and breaks into a dance. “My father will teach me how to ride a scooter next,” she says.
Coping with Down Syndrome
Go in for genetic counselling. This will determine through genetic test, if you or your baby are at risk of genetic disorders
Go through a systematic program of therapy, exercises and activities to address any developmental delays in children with Down syndrome. Do this when the child is between 0 and 2 years of age
Accept the children and include them into your daily activities.

Wednesday, December 18, 2013

English and Welsh women are eight times more likely to abort a baby with Down syndrome than Irish women

By Dr. Peter Saunders from National Right to Life News Today:
Editor’s note. Dr. Saunders is a former general surgeon and is CEO of Christian Medical Fellowship, a UK-based organization with 4,500 UK doctors and 1,000 medical students as members.
If you have Down’s syndrome and your mother lives in Ireland then your chances of making it to birth are considerably greater than if you have the misfortune to be conceived in England or Wales.
English and Welsh women are 7.6 times more likely than Irish women to have an abortion for a baby with Down’s Syndrome, 6 times more likely to have an abortion for Edward’s syndrome and 4 times more likely to have one for Patau’s syndrome.
Furthermore the Irish birth rate for Down’s syndrome babies is about twice that for England and Wales.
The way these figures are derived is explained below. The calculations are not simple as many babies with all these conditions are not diagnosed until after birth.
Some of the most common congenital abnormalities accounting for abortions in England and Wales are ‘trisomies’, in which there are three copies of one particular chromosome rather than two.
The most common trisomies are Down’s syndrome (trisomy 21), Edwards’ syndrome (18) and Patau syndrome (13). People with DS now have an average life expectancy of between 50 and 60 but those with Edwards’ syndrome (ES) and Patau syndrome (PS) will all die in early childhood.
The National Down Syndrome Cytogenetic Register (NDSCR) was set up on January 1, 1989 and holds anonymous data from all clinical cytogenetic laboratories in England and Wales of cases of DS, ES and PS diagnosed before or after birth.

Tuesday, December 17, 2013

Down syndrome group wins $1,500

Cintia Desrosiers-Rivera/For Pacific Daily News
Down Syndrome Association members and their children stand with Dr. Tom Shieh to receive the first-place award for their decorated tree during the 9th annual Shieh Su Ying Charity Tree Contest at Guam Premier Outlets in Tamuning on Sunday. They won $1,500 for their organization.

Monday, December 16, 2013

UC San Diego Launches Unprecedented Down Syndrome Study

from UC San Diego:
To many, Down syndrome (DS) is a childhood condition. But improved health care means that individuals with DS now routinely reach age 50 or 60 years of age, sometimes beyond.  However, if they live long enough, people with Down syndrome are almost certain to develop Alzheimer’s disease (AD).
Risk estimates vary, but the National Down Syndrome Society says that nearly 25 percent of individuals with DS over the age of 35 show signs of Alzheimer’s-type dementia, a percentage that dramatically increases with age. Almost all develop dementia by the age of 60.
“The more we learn about Down syndrome and Alzheimer’s disease, the more we realize these conditions – one seen at birth, the other quite late in life – are two sides of the same coin,” said William C. Mobley, MD, PhD, professor and chair of the Department of Neurosciences at UC San Diego School of Medicine. “Autopsies of DS and AD brains reveal virtually identical pathologies – the same telltale amyloid plaques and neurofibrillary tangles.”
Under the auspices of the Alzheimer’s Disease Cooperative Study (ADCS), based at the University of California, San Diego School of Medicine, a new clinical study called the Down Syndrome Biomarker Initiative (DSBI) was launched in March 2013. According to the study’s director, Michael Rafii, MD, PhD – medical director of the ADCS – its aim is to discover indicators of Alzheimer’s and study progression of the disease, with the ultimate goal of better understanding brain aging and AD in adults with Down syndrome.
The three-year pilot study has enrolled 12 participants, aged 30 to 60 years of age. Study participants will be screened for various biomarkers of AD, using tests that include three types of brain scans, retinal amyloid imaging and blood tests, among others.
“Findings to date using MRI and amyloid PET scans indicate that individuals with Down syndrome show the same brain patterns as those in the general population with the earliest stages of the memory-robbing disease, called prodromal AD,” said Rafii.  He added that indications of increased brain amyloid deposition – the insoluble protein aggregates found in the brains of patients with AD that are thought to be an underlying cause of the disease – is similar in individuals with DS and those in the general population with AD.
People with amyloid deposition in the brain experience progressive cognitive deterioration. Brain atrophy – shrinking of the brain’s hippocampus – caused by the amyloid buildup, affects routine functional abilities, ultimately leading to complete physical disability.
“By understanding the progression of the disease in people with Down syndrome and those in the general population, we hope discoveries can be made in each group that can be shared between both populations,” said Rafii. 
The design of the DSBI pilot study is patterned after the Alzheimer’s Disease Neuroimaging Initiative (ADNI), which began in 2004 to establish neuroimaging and biomarker measures of AD.  ADNI tracked the changes taking place in the brains of 800 older people, either free of symptoms or diagnosed with late-stage mild cognitive disorder and early Alzheimer’s disease. 
“Our aim is for the Down Syndrome Biomarker Initiative to mirror ADNI’s successes,” Rafii said.  “ADNI has helped the international Alzheimer’s research community learn significant lessons about the pathology and biomarkers of AD, which in turn has driven new ways of looking at the disease and new studies that we hope will lead to viable treatments. We are confident we can do the same thing for Down syndrome.” 
The 12-subject pilot study at UC San Diego is funded by Janssen Research & Development, LLC.  The research is projected to expand into a five-year, 1,000-subject international study.
# # #
Media Contact: Debra Kain, 619-543-6163, ddkain@ucsd.edu; Jeffree Itrich, ADCS, 858-246-1317, jitrich@ucsd.edu

Sunday, December 15, 2013

Moms AIM to help kids with Down syndrome

by Johnathan Charlton from The StarPhoenix:
When Christy Waldner learned her seven-day-old daughter had Down syndrome, it felt like a slap in the face.
All she could think of was a low-functioning boy she went to school with who was cruelly teased and taunted into swearing for the amusement of others.
“That’s the first thing that popped into my mind, how this boy didn’t have great speech but the thing he could do was swear and everybody thought it was funny.
“That’s what I thought, instantly, about my daughter — that she would be bullied and teased and it would be a negative experience.”
The reality for the Muenster family is fortunately quite different.
Sydney is now a happy, funny 15-year-old who plays soccer and volleyball with her friends at school (she can serve overhand, Waldner notes proudly) and wants a horse for Christmas.
But the journey was a challenge, with few services for the family in Saskatchewan.
Now, Waldner and Saskatoon parent Tammy Ives have started the non-profit Ability in Me to help other families.
“The two of us together started moving ahead. It was amazing the people we ran into and connected with,” Waldner said.
If everything goes according to plan, they’ll hire two speech pathologists, a certified teacher and an educational assistant when they open next September.
Ives’ six-year-old son Alexander “needs to see things or do things hundreds of times more than a typical kid,” Ives said.
There’s not much one-on-one speech therapy in schools, and while Alexander goes for private therapy, not everyone can afford that, Ives said.
They’ve modelled AIM after Calgary-based organization PREP.
Sydney was one year old when they first went to PREP and saw the level of service and the expertise the centre has, Waldner said.
“You walked in the doors and it felt like a breath of fresh air. They were able to teach us and help us, it was just incredible.”
When they later accessed services in Saskatchewan, there was no comparison, Waldner said.
PREP’s expectations were high, which boosted the family’s hopes for Sydney — that she’d progress and be able to contribute to society.
“It was like night and day. It was like, oh my gosh, we need this.”
They have a business plan, a volunteer board and have met with the Ministry of Education and early childhood intervention programs.
They held their first information session in October.
Twenty-five parents have signed up so far, and AIM should have a capacity for 110 kids.
Ability In Me will be based in Saskatoon but hopes to operate across the province.
Details about the costs haven’t been finalized, but Waldner doesn’t want money to be a barrier for families.
More information is available at aimprogram.ca.
with files by Sean Trembath

Saturday, December 14, 2013

former mayor and Health Board Member calls parent a 'retard'

from the Otago Daily Times:
Whanganui District Health Board member, councillor and former mayor Michael Laws is in hot water after calling the parent of a child with Down syndrome a "retard''.
Mr Laws has been embroiled in discussion on Facebook where he suggested all pregnancies found positive for Down syndrome should be aborted in an effort to "eradicate'' the condition.
The Chronicle was alerted to the discussion by Hamilton man Keith Maynard, whom Mr Laws called a fascist and a "retard'' in a private exchange on the social network.
In the messages Mr Maynard, whose son Keegan has Down syndrome, said he was advocating for "fair and reasonable information for expectant parents'' but Mr Laws did not accept this.
"Let's be honest shall we: you lot had the really bad luck to have a Downs child. For some twisted reason, because you've drawn the short straw, you think others should share your fate.
"We choose and would choose to abort such ... and fascists like you want that test and choice denied,'' Mr Laws wrote.
Mr Maynard said he supported pre-natal screening for conditions like Down syndrome.
"I would, however, differ from your own extremist views in as much as once a diagnosis is confirmed the parent be given balanced and honest information so that a truly informed and intelligent choice may be made.''
Mr Maynard told the Chronicle he was incensed Mr Laws held a position of power and responsibility in the health board and called the exchange "unfortunate'' and "disturbing''.
"To say I am appalled by his manner and rudeness would be an understatement. I am horrified that he holds a position within the Whanganui DHB. He very obviously has an agenda that most people would be repulsed by.''
Mr Maynard said he found this point of view reminiscent of the eugenics programmes in Nazi Germany, which prompted Mr Laws to call him "a retard''.
But yesterday Mr Laws said he did not regret the name-calling.
"He insulted me in a private conversation, so I insulted him back. On the contrary, I feel I have the responsibility as a district health board member to call out the Maynards of this world.
"He's started a hate campaign against me, he's set up a hate site and he hasn't properly represented the [Facebook] conversation. He invaded my private Facebook, which I do not appreciate.''

Friday, December 13, 2013

Amy Volkmann earns Girl Scout Gold Award

from Chron.com:
Amy Volkmann received the Girl Scout Gold Award from the Girl Scouts of San Jacinto Council on Nov. 21.
Amy led a team of volunteers in organizing and hosting a book club during a one-year period for children with Down syndrome, according to a release from Girl Scouts of San Jacinto Council. In addition to bettering their reading skills, book club members also had the chance to learn valuable social skills by interacting with each other and discussing the books they read.
"I learned that helping a person with Down syndrome is fun and that some kids need more help than others," she said in a release.
The Girl Scout Gold Award represents the highest achievement in Girl Scouting; it recognizes girls in grades 9 through 12 who demonstrate leadership through sustainable and measurable Take Action projects.
The Girl Scouts of San Jacinto Council, founded by Mrs. F.M. Law and Miss Corinne Fonde in 1922 in Houston, serves 26 counties in southeast Texas. The council is governed by a board of directors made up of community leaders. Stacy Methvin is the chairwoman of the board and president of the council. Mary Vitek is the chief executive officer.

Thursday, December 12, 2013

Bus driver admits assaulting disabled man

by Julie Manganis from The Salem News:
DANVERS — A now-fired bus driver admitted yesterday to backhanding a 21-year-old passenger with Down syndrome because he was irritated by the young man’s attempt to start a conversation with him during one trip last year.
John Marrs, 53, of Ober Street, Beverly, was found guilty of a charge of assault and battery on a disabled person, one of three counts he’d originally faced following an investigation by state police last year.
“At some point you have to draw a line in the sand, and striking a disabled (individual) because of being aggravated or irritated is just unacceptable,” said Salem District Court Judge Michael Lauranzano.
Lauranzano imposed a year of probation, with conditions that include anger management classes and no work with disabled children or adults.
Prosecutors had been seeking a suspended jail term and similar conditions for Marrs, who was a driver for Danvers-based LBK Transportation, which provides rides for developmentally and intellectually disabled people.
The Sept. 19, 2012, incident came to the attention of investigators about a month later, through another passenger, whose grandmother took him to be interviewed by state police and the Essex district attorney’s office, according to a police report.

Wednesday, December 11, 2013

Troy mother of a child with Down Syndrome founds Special Miracles online community

by Rachel Dubrovin from KLEWTV CBS 3:
A mother in Troy wasn't sure what to believe when her second son was diagnosed with Down syndrome shortly after birth.

Reporter Rachel Dubrovin explains how the diagnosis inspired her to make a difference, and help thousands of other parents overcome the negative stigmas that are associated with having an extra chromosome.

"Well, it's just an extra chromosome," said Special Miracles Founder Sabrina Moyer.

Colton Moyer is a 15-month-old boy with Down Syndrome. His parents, Dan and Sabrina Moyer, said the diagnosis came shortly after he was born.

"I had no knowledge, or really any experience, or any information about Down syndrome, and so I think I was in extreme disbelief and shock," said Sabrina.

"There was so much to learn, and so many questions that the internet just couldn't answer," said Dan. "And it was a lot of concern of you know, what are we facing?"

"Everything's just thrown at you that day, that moment, you know," said Sabrina. "And you start thinking about things that may or may not happen in the future."

The Moyers started doing research on Down syndrome, and Sabrina set up an online community to update her family and friends on her findings and Colton's progress.

"It kind of just snowballed," said Sabrina. "It was on Facebook, I did have a website, and I guess there was a need for it."

Sabrina Moyer named the online community 'Special Miracles.' She created this Facebook page a little over a year ago, and now it has more than 33,000 followers.

Tuesday, December 10, 2013

A boy with Down syndrome just might just be his football team’s MVP

by Kristie Smith from Dallas News:
Bill and Sandie Wood waited anxiously on the delivery of their son, Chase, 15 years ago. Chase’s older brother, Austin, was also excited for his younger brother to arrive.
None of them saw it coming when the doctor walked into the room and informed them that their child had Down syndrome. Down syndrome is a genetic condition that causes delays in physical and intellectual development.
“We were clueless,” Sandie said. “I had never heard of Chase’s condition. I did not realize how much help I was going to need and thought I could do it on my own but quickly realized that was not the case. Thank God for DSG — Down Syndrome Guild.”
DSG is a group of parents who help others who have children born with disabilities.
Now, 15 years later, Chase has grown to 5 feet 9 inches and is 168 pounds of athletic ability. Since his seventh-grade year, he has been a member of Rockwall ISD’s Williams Middle School Wildcat football team playing defensive tackle. His younger brother, Seth, assists and is one of his strongest supporters.
It was not easy for Chase to be a part of the team. While head coach Kip Muhl was receptive to Sandie’s proposal, he understandably was concerned about safety issues. However, after consideration, the coach agreed to allow Chase to be a Wildcat.

Monday, December 9, 2013

LGH volunteer program a boon for hospital and volunteers alike

Supervisor Joe Zajac of Niles works with Owen Laatsch, 22, center, and Anthony Bossart, 23, left, placing cheesecake slices on plates for the holiday party at Advocate Lutheran General Hospital.
by Eileen O. Daday from the Daily Herald:
Tuesdays are special for Owen Laatsch, 22, of Arlington Heights. That's when he shows up to volunteer at Advocate Lutheran General Hospital in Park Ridge in the kitchen prep area alongside his mentor, Joe Zajac.
Last week, when Laatsch set out on his shift, he gave Zajac a high-five and declared to his mother, "He's the man!"
Laatsch has Down syndrome and is a patient at the hospital's Adult Down Syndrome Center, where increasingly its staff is promoting volunteering as part of its holistic approach to treatment.
"When he gets up on Tuesdays, he's just giddy," says Laatsch's mother, Cathy Laatsch. "He loves coming here and the teamwork involved."
Over the last year, 12 adults with Down syndrome have begun volunteering at the hospital, in the food and nutrition area, pediatric therapy department and gift shop — even the childbirth education department and the Adult Down Syndrome Center itself, greeting and escorting patients.
The center has treated 5,500 patients with Down syndrome over the last 20 years. An expansion last year allowed it to bring more healthy lifestyle programs to its patients, enhancing its holistic approach.
"We meet the medical needs of our patients but we also want to meet their life needs," says Dr. Brian Chicoine, an Arlington Heights resident and center director. "We work with them, their families and social agencies to promote health."

Sunday, December 8, 2013

Truman Cheerleader Brings Unmatched Enthusiasm

by Justin Sampson from St. Joe Channel:
(ST. JOSEPH) Fourteen-year-old Aliyah Hall, an eighth grader at Truman Middle School, enjoys staying active, like many teenagers, with things like swimming and basketball.
Also like many children, she was born with down sydnrome.
"I really can't explain it to you, but it was something that I just knew," Aliyah's mother, Laurie, said. "After she was born, it was more of a confirmation for me."
An avid dancer as well, Aliyah quickly took a shine to the Truman cheer squad when she got to middle school and wanted to be a part of it. It was something Laurie wasn't sure about at first, given that Truman had never had a special needs cheerleader before.
"I shared my concerns because not everyone deals with special needs children the say way. They were awesome. They really embraced her."

Saturday, December 7, 2013

Efficacy of selected treadmill training programme on oxidative stress in adolescents with Down syndrome

from the Eastern Mediterranean Health Journal and the World Health Organiziation:

ABSTRACT The aim of this study was to assess the efficacy of an electronic treadmill exercise training programme on malondialdehyde (MDA) as a marker for lipid peroxidation and the antioxidant enzyme glutathione peroxidase (GPx) in adolescents with Down syndrome. The study was carried out on 30 adolescent males with Down syndrome, ranging in age from 15 to 18 years, with 30 healthy subjects as a control group. Clinical examination, anthropometric measurements and determination of GPx activity and MDA before and after exercise were done. A treadmill training programme was performed for 12 weeks. Our data showed a significant increase in GPx activity and decrease in serum level of MDA in Down syndrome individuals after treadmill exercise for 3 months. Exercise promotion for adolescents with Down syndrome requires attention to motivators and facilitators of exercise adherence as it may limit risk of increased neurological consequences associated with oxidative stress and improve quality of life.

Friday, December 6, 2013

The simplest way to raise awareness about Down syndrome this holiday season

Christmas 2011
by Mark Leach from Down Syndrome Prenatal Testing:
In 2007, I attended my first ever National Down Syndrome Congress conference. Campbell Brasington, a genetic counselor from Charlotte, North Carolina, shared the simplest way to raise awareness about Down syndrome and engage in medical outreach. 
This is the time of year when many of us will be mailing out Christmas/Holiday/End-of-Year cards to our friends and family. Typically, these annual missives will include a photo of the family and, for some, a written update on the family’s activities. Brasington made the following simple suggestion for families to raise awareness about Down syndrome:
Include your obstetrician on your holiday card mailing list.
She explained that for many OBs, their experience with individuals with Down syndrome is the relatively brief moment of when they deliver a child with Down syndrome. If you have a child with Down syndrome, you can show how this child your OB delivered is growing up and what your child is doing. You can provide your OB a glimpse of what a life with Down syndrome can be like.
This simple tip isn’t limited just to OBs, but it would be good to at least start there. Parents could also consider adding the labor and delivery department of the hospital where their child was born, as well as the medical professionals who provided prenatal care, like genetic counselors, geneticists, and maternal-fetal medicine specialists.
This year, a group of active moms launched a social media campaign to encourage families to follow this simple awareness raising tip. I have graciously been credited with this idea, but Campbell Brasington is who deserves the recognition as the originator of this great, easy idea.
And, also, this year, Lettercase, the publisher of materials through the National Center for Prenatal & Postnatal Down Syndrome Resources (where I serve as the bioethics specialist), is offering a great deal:
This year, please consider sending a Holiday card to your medical provider that includes a photo of your loved one with Down syndrome. From #GivingTuesday to Friday, December 6, anyone who makes a $15 donation to the National Center for Prenatal and Postnatal Down Syndrome Resources will receive a Medical Provider Holiday Gift Pack that includes “Understanding a Down Syndrome Diagnosis,” “Delivering a Down Syndrome Diagnosis,” our new testing pamphlet, and 5 National Center postcards.
If you missed it, today is the last day for this great deal. This gift pack is for anyone who cares about their local obstetricians having the medically-reviewed and recommended materials to be provided patients receiving a prenatal test result for Down syndrome. You can make a $15 donation to the National Center to get this gift pack at this link.
If you have a loved one with Down syndrome, I hope you will follow through with this simple tip of including your OB on your family’s holiday card list. If families did this each year, it would provide examples of what a life with Down syndrome can be like for the OB and other health care providers to share with their patients when they first deliver the diagnosis. Who knows: your family’s photo may be the one shown to a new or expectant mom to say, “well, this is how one of the families whose child I delivered is doing.”

Thursday, December 5, 2013

Fraternity sponsors annual charity Christmas concert

Starry Night, a benefit concert presented by USU’s Alpha Tau Omega fraternity, will return to campus for its second year on Friday.

Featuring Christmas music in a variety of musical styles, the proceeds from the event will be donated to Racing for Orphans with Down Syndrome, a local nonprofit organization which aims to raise money to aid in the adoption of children who have Down syndrome.

“We hope this can be something people can come to to take a break from the hustle and bustle and spending of the holiday season to come out, listen to some good music and really remember what Christmas is all about,” said Joe Hill, the vice president of Alpha Tau Omega and the event chairman for Starry Night.

Last year’s concert, which Hill said raised $300 in donations for the Sub For Santa program despite not being a sanctioned fundraising event, lead Hill to the idea of using the concert as a philanthropic opportunity.

Tickets for the event, which requires semiformal attire for entry, are $7. Hill said Alpha Tau Omega hopes to raise more than $2,000 for RODS through the event, which will begin at 7 p.m. in USU’s Performance Hall.

Wednesday, December 4, 2013

Another reason I love Darius Rucker...

by Carol Hughes from KFDI FM 101.3:

I love him because of his big heart!
He totally surprised this boy who has Down Syndrome when he performed his song during a talent show.
Here's what The Boot had to say about the surprise:
"It was already a good night for 16-year-old Frankie Antonelli when he took the stage of his high school talent show to cheers from the audience. But his night was about to get a lot better — Darius Rucker was planning to join the teen, who has Down syndrome, on stage.
Antonelli’s friends and family can be heard cheering the teen on as he performs Rucker’s hit ‘We Still Got Time.’ The cheers get louder at the 3:10 mark in the video above, when Rucker appears on stage with Antonelli and shows that even though he is a huge country star, he has managed to stay down to earth.
Rucker and Antonelli finished the song next to one another, with Rucker’s arm around Antonelli’s shoulders, and the duo ended the song with a hug on the stage of Wando High School in Rucker’s native South Carolina.

Tuesday, December 3, 2013

Today is Giving Tuesday


Today is #GivingTuesday, a campaign to create a national day of giving at the start of the annual holiday season. It celebrates and encourages charitable activities that support non-profit organizations.  Read more about it here

Last year on #GivingTuesday, NDSS donors represented 20 different states.  Endorsements from people all over the community made a huge impact on the number of donations we received and the amount of people that were “talking” about NDSS on a variety of social media channels. Lots of our celebrity ambassadors joined in too, many of whom have agreed to help us again.  Today, our goal is to raise $5,000 and encourage 10,000 individual social media users to engage with NDSS in connection with #GivingTuesday.  We can do this!

If you’d like to join us in the endorsement of NDSS and support a worldwide day of giving back, please share our posts and tweet and chat on our behalf.  Please include @NDSS and #GivingTuesday so we can track your communication. Here are some sample tweets you can use today. 

----Support @NDSS and people with Down syndrome by donating $21 today! ndss.kintera.org/GivingTuesday #GivingTuesday

----Promote the value, acceptance and inclusion of people with #Downsyndrome this #GivingTuesday. Donate $21 to @NDSS! ndss.kintera.org/GivingTuesday

----Donate $21 to @NDSS in honor of those with an extra 21st chromosome today for #GivingTuesday! ndss.kintera.org/GivingTuesday #Downsyndrome

----After #BlackFriday and #CyberMonday donate $21 to @NDSS for #GivingTuesday and honor those with an extra chromosome 21! ndss.kintera.org/GivingTuesday

----Tis the season of giving! Support @NDSS, one of my favorite charities, in honor of #GivingTuesday by donating $21! ndss.kintera.org/GivingTuesday

If you’d like to make a donation and help us reach our goal, please click here.

If you’d like to stay connected to NDSS in real time, please follow us on one or all of these social media channels:

NDSS on Facebook
NDSS on Twitter
NDSS on Pinterest
NDSS on YouTube
NDSS Buddy Walk® on Facebook
NDSS Buddy Walk® on Twitter

With many thanks this holiday season,

Your Friends at NDSS

Parents of children with Down syndrome mentor other parents

by Karen Garloch from The Charlotte Observer and Centre Daily Times:
About two hours after Melissa Thomason gave birth to her son Welles, she and her husband learned their baby had the chromosomal abnormality known as Down syndrome.
"I remember sitting in the hospital room and having a lot of uncertainty about what that diagnosis meant for us, what it meant for him." She wished she could talk to someone who'd had the same experience.
So when the Down Syndrome Association of Greater Charlotte (N.C.) recruited parents to become mentors for new parents of babies with Down syndrome, Thomason was among the first to sign up. "I felt like I needed to be that person for someone else."Through the "First Call" program, Thomason, 32, of Harrisburg, N.C., has been matched with two other families who learned of their babies' Down syndrome through prenatal genetic testing.
Both couples had chosen to continue their pregnancies before they met Thomason, but she wouldn't have been surprised if they had considered abortion. If she had known in advance, Thomason said, "I would have had serious questions about whether I wanted to continue the pregnancy or not.
"Today though, Welles is 11 months old, and Thomason feels differently."

Monday, December 2, 2013

Football Team Honors Player With Down Syndrome

Nathan Hershey is at every practice, every game and has even earned the nickname "coach" during his four years at his high
school. So, his coach decided to end the season with a special surprise.

Sunday, December 1, 2013

Nicole Scherzinger wants to adopt child with Down syndrome

from Business Standard:
Nicole Scherzinger has said that she has wondered if God would bless her with a child with Down's syndrome and if that doesn't happen then she is considering adopting one.
The former Pussycat Doll, who became a Special Olympics ambassador because she grew up with an aunt who has the disability, said that her aunt is a positive influence and inspiration for her, Metro.co.uk reported.
The former girlfriend of Formula 1 ace Lewis Hamilton said that people get caught up in everyday little problems and in their own vanity, but her aunt Keziah Frederick is always happy and ready to give people love and hug no matter what.
Scherzinger said that her aunt is a big walking ball of love and has opened up her eyes and her heart to these special people like her.

Saturday, November 30, 2013

ABLE Act Gets Majority Support

from the Autism Policy Blog by Pitney:

The ABLE Act (HR.647 and S.313) yesterday had majority support in both chambers as the 51st senator became cosponsor (counting prime sponsor Robert Casey (D-PA)). As of this morning, it had 310 in the House (including prime sponsor Ander Crenshaw R-FL)). A number of lawmakers agreed to cosponsor when they met with advocates during last week's Autism Speaks to Washington summit. Autism Speaks provides the full list here.

Many families have been searching for a way to plan for the future of a child with severe disabilities. While they are able to save for the educational needs of their other children through “529” college tuition plans, they find those plans do not fit the needs of their child with severe disabilities, since their children may now, or in adulthood, need the long term services and supports of the Medicaid program and the income assistance of the Supplemental Security Income (SSI) program. Some families have found it too expensive to establish a trust which meets the requirements of the Medicaid and SSI programs, yet they recognize that their loved ones may live for many decades beyond the ability of the parents to supplement the services they receive through Medicaid. Others want to ensure the financial security of family members who have the level of disability required for Medicaid eligibility, but for now, are managing to function without the use of those benefits. Still others want to ensure that their family member can exercise control over the funds in the account without endangering the Medicaid and SSI benefits on which they may rely. The ABLE Act (S.313 / H.R.647) would give individuals with disabilities and their families access to accounts that would allow individual choice and control while protecting eligibility for Medicaid, SSI, and other important federal benefits for people with disabilities.
Congressman Ander Crenshaw (R-FL), chairman of the Financial Services and General Government Appropriations Subcommittee, stated, “Support for tax-free savings accounts for individuals with disabilities stands at its highest level ever - testament to the tireless dedication of those who believe that ALL Americans deserve equality when it comes to financial planning tools. It’s time to pass this legislation and create a brighter future for those in need. ”

Senator Robert Casey (D-PA) stated, “The ABLE Act is commonsense bipartisan legislation that will help make it easier for those families to save for their children’s future care, and we should pass it immediately. Individuals with disabilities and their families face challenges many of us can’t even begin to imagine.

Friday, November 29, 2013

OKC center fined after trying to expel child with Down Syndrome

from KFOR 4 Oklahoma City:
OKLAHOMA CITY -  An agreement has been reached between the Justice Department and a child development center in Oklahoma City after the center discriminated against a child with Down Syndrome.
The Justice Department says Camelot Child Development Center of Oklahoma City and Edmond violated the Americans with Disabilities Act.
Authorities claim the center prohibited a child with Down Syndrome to go on field trips and threatened to expel her because of her developmental delays.
Also, the girl is not fully toilet-trained and requires help with her diaper.
Officials say that while Camelot helps younger children, workers refused to provide that kind of assistance to the girl during field trips.
Authorities say that is a direct violation of the ADA, which prohibits discrimination on the basis of disability in child care centers.
“Children are our most valuable resource and must be afforded equal opportunities to grow, learn, and develop,” said U.S. Attorney Sanford C. Coats.  “The Americans with Disabilities Act ensures that a child with a disability has the same access to those opportunities as a child who is not disabled.”
The Justice Department says Camelot worked closely with them through the investigation to change its policies.
Under the new agreement, Camelot will pay $3,000 to the family and provide one full year of child care services free of charge.
Camelot will also train its staff on the new anti-discrimination policy and will be monitored by the Justice Department for three years.