by Kyle Barnett from the St. Charles Herald Guide:
Craig Blackburn has a motto by which he lives.
“Never give up. That’s my message. Never give up,” he said. “If you have fears don’t look back, look ahead.”
That
is a message the 34-year-old Hahnville High School graduate has been
carrying through his entire life, and Blackburn has had to overcome a
lot. He was born with Down syndrome as well as a heart defect that had
to be repaired through open heart surgery when he was an infant.
Now, Blackburn has been able to accomplish so much that he has become an advocate for others with disabilities.
He
is on the board of the Down Syndrome Association of Greater New Orleans
and regularly travels the region and country giving speeches to
educators and those within the disabled community. In recent years, he
spoke to a crowd of 1,300 at Tulane University and also traveled to
Qatar to give a speech.
“It’s about educators and families and
their child’s future to tell them they can do it and not to give up on
their dreams. When I do my presentation it is like making them believe
what they can do and don’t look back,” he said.
by Holly Richards from Newark Advocate.com:
His eyes bulging, taking in hundreds of colorful ornaments adorning a bright Christmas tree, Sebastian Longstreth extends his tiny fingers to a glittering red bulb.
“None of our ornaments are on there — they’re all his,” said Shannon Longstreth, Sebastian’s mother.
For the past month, 11-month-old Sebastian has been receiving hundreds of Christmas cards and ornaments from around the country and world.
“His Facebook page has 7,829 ‘likes,’ and everybody was asking what to get him for Christmas,” Longstreth said. “I thought we should give him his own tree, and ask people to make, buy or take ornaments from their trees to send. There are a lot of handmade ones, and we have close to 400 now. We’ve even started hanging them on the banister.”
Longstreth said local people are giving, and mailboxes are filled to the brim daily with gifts from every state. International packages have been received from England, Ireland, Australia and other countries.
This is another example of support the Longstreth family has received, even before Sebastian was born. On Jan. 23, Shannon and her husband, Brandon Longstreth, welcomed their third child. She was five months pregnant with Sebastian when a blood test revealed he had Down syndrome. “I wasn’t shocked about the Down syndrome diagnosis, but it was the heart issues that bothered me,” Longstreth previously said. “That was heartbreaking. He has an atrioventricular canal defect, but he’s had surgery, and it looks great. He’s a fighter. I don’t treat him like he’s ‘special.’ I treat him like a baby.”
After Longstreth uploaded photos to Facebook shortly after Sebastian was born, they quickly received 112 “likes.” She started the Sebastian’s Journey page on Facebook, which had 82 “likes” in 15 hours. Now, he’s up to almost 8,000 “likes,” from a mix of familiar faces and strangers. “The public’s been great, and I pay attention to people I receive messages from,” Longstreth said. “I try to recognize them and respond to them all. These people really support me, and one — Phillip McCloud — gave us a new refrigerator. Without social media, I’d be lost. It’s amazing to have someone out there who is concerned about us.”
Facebook also has given Longstreth her “guardian angels,” Dona “Mimi” Joseph and Kelly Treadway. They started out as strangers who happened to live nearby, and now there’s almost no one Longstreth feels closer to. Each followed Sebastian on Facebook and reached out to Longstreth, wanting to be involved in the child’s life.
After Joseph’s husband died in July, she questioned if she would find love again. A month later it came in the form of young Sebastian. Joseph and Treadway have become daily visitors who sit with him so Longstreth can tend to her family and herself, giving her respite from Sebastian’s around-the-clock care.
“It’s a different world,’ Joseph said. “He’s a godsend to us. He was meant to come into my life when he did.”
“We’re here to help with whatever they need,” Treadway said. “I feel like he’s my grandchild, too.”
Angela Smith, a home nursing caregiver with Maxim Healthcare, of Newark, is at the Longstreth home 40 hours each week to assist with Sebastian’s needs. She already has seen him make great strides and looks forward to many more.
“He’s a remarkable client, so strong and happy,” she said. “He has the potential to get better. Being here gives me a sense of purpose, and this family has become my family.”
As Sebastian rested comfortably on Joseph, Treadway and Smith helped Longstreth open mail and hang the ornaments that continue to pour in. They are floored by the response so far.
“I feel the love on this tree,” Longstreth said. “He really is Zanesville’s baby. He’s touched so many people.” hrichards@centralohio.com 740-450-6772 Twitter: @hmrtr
by Dorothy McKnight from Daily Press: Look around you; there is beauty everywhere. The beauty that is seen daily might be outer beauty or someone's inner beauty. Families that include a member who happens to have Down syndrome see the beauty in their children everyday. But there was once a time in American society when parents who gave birth to a baby with Down syndrome were advised to place the infant in an institution and move on with their lives. Even when they decided to bring their child home, parents were not given much encouragement that their son or daughter would have a good "quality" life. With advancements in genetics and prenatal care, many women who learn during their pregnancy that they will be having a baby with Down syndrome are able to prepare and educate themselves about their child's diagnosis. Both Cindy Vader and Lourie Schuenke of Escanaba faced those same decisions themselves when they gave birth to their sons, both born with Down syndrome. In each case, their little boys have brought such joy into their own lives and the lives of their families, the women are now motivated to encourage and support other women who are facing the same choices they faced. Cindy and Lourie are members of the Upper Peninsula Down Syndrome Association based in Marquette yet serving the entire Upper Peninsula, and are working hard locally to provide information to families of children with Down syndrome. "The Upper Peninsula Down Syndrome Association started as a group of parents getting together to reach out to each other for support and to reach out into our community for awareness," said Lourie. Jacob, the only child of Cindy and her husband, Len, was born with Down syndrome 15 months ago. The mother of two sons, Lourie's younger child, Konner, 5 1/2, also has Down syndrome. Cindy learned of her baby's diagnosis during her pregnancy. While undergoing a routine prenatal exam, she was given an ultrasound and saw her unborn child for the first time. "During the ultrasound there were no evident markers for Down syndrome, he looked perfect," Cindy said with a tender smile. "I even saw him sucking his thumb." But Jacob's condition was diagnosed during a subsequent amniocentesis that her doctor recommended due to her being high risk because she was already in her late 30's when she became pregnant. "For me, knowledge is power," said Cindy. "The test showed I was going to have a little boy with Down syndrome. Due to my age I knew there was a chance but the doctor called me at home to tell me for sure. My husband wasn't home so the doctor's words felt like a punch to the stomach. I didn't have any information about Down syndrome and didn't even know anyone with Down syndrome." After discussing the call with her husband, Cindy said she was upset when subsequent phone calls yielded no offer of information or assistance. "When I think about it, It still feels like it was just yesterday," she said. Cindy then decided to take a few days off work to education herself about her unborn baby's diagnosis. After connecting with another soon-to-be-mother who was also expecting a child with Down syndrome, she learned about the support group. Lourie's discovery of her baby's diagnosis didn't become evident until after his birth. An ultrasound was inconclusive and suggested that the baby might be developing a tumor on the base of his brain and he might be born with cerebral palsy. Subsequent ultrasounds showed no tumor and doctors said that her child was healthy. Down syndrome was never mentioned. "His diagnosis of Down syndrome didn't even occur until after he was born, and he had so many medical issues they took priority over everything," Lourie said. But Lourie soon came to the realization that the road on which she was about to embark with her little son was going to be a rocky one due to those medical issues. A day after his birth, Konner was taken from St. Francis Hospital where he was born, to Marquette General where he spent the next 26 days in the Neonatal Intensive Care Unit (NICU) before he was airlifted to Children's Hospital in Milwaukee. Konner was born with pneumonia in both lungs and it was discovered that he a large hole in the center of his heart which needed a full AV canal repair. He also was born with duodenal atresia, and malrotation of the colon. Her son also had other medical issues and later had a G-tube placed, which is a tube to the stomach for feeding. He underwent three surgical procedures the first day in Milwaukee. "I was told he was not going to survive," Lourie said. Almost three months after his birth, Konner was allowed go home from the hospital for the first time. But Konner's ordeal wasn't over. He still needed surgery to correct his heart condition. "He weighed 6 pounds, 13 ounces when he was born but by the time a week had passed, he was just about 4 pounds," Lourie said. "He needed to have the heart surgery and he had to be at a certain weight in order to undergo open heart surgery and survive." More than 5 years later and with a total of 15 surgeries under his belt, Konner is now a student at the ISD Learning Center. "He's doing very well there," Lourie said. Although due to his medical issues, most milestones were delayed. Konner didn't walk until he was almost 3. He continues to undergo physical and occupational therapy as well as speech therapy. "We knew that Konner's jaw and surrounding muscles were weak so he began learning to use sign language when he was barely two and is now trying to learn to verbalize along with sign," Lourie said. "He's also had four surgeries on his ears and that might have contributed to why he was unable to talk. He wasn't able to hear in the first place." Lourie smiles when she speaks of the special relationship between Konner and his older brother, Brendon16-years-old. "They're great together, " she said. So what hopes for the future do both ladies have for their sons? "I have as much hope for Konner as I hope for my 16-year-old son," said Lourie. "None of us have any guarantees for our children. There are many typical children who develop serious problems as they grow up and you don't give up on them. So why shouldn't I expect the best for Konner?" Cindy expressed even more encouraging news for families with children who have Down syndrome. "With more research and more therapies that are becoming available, I've learned of more children with Down syndrome graduating from college and even getting master's degrees," she said.
A young girl with Down syndrome has come leaps and bounds since surviving open heart surgery as a newborn.
Ten-year-old Lucie Fickling weighed just seven pounds at birth and under went major surgery for a heart defect aged just three months old.
Despite a difficult first year, the sprightly youngster has gone on to win top awards in scouting and gymnastics.
Lucie joined the First Northolt Sea Scouts, based in Dabbs Hill Lane, Northolt, as a beaver four years ago. After months of hard work to collect 15 badges, two weeks ago she was awarded the Chief Scouts Silver award - one of the highest accolades for a young cub.
But that was not her only taste of success.
The sporty youngster has travelled to Florida to compete in the World Cheerleading Championships and recently won two silver medals for the vault and floor at the regional finals of the Gymnastics Movement for People with Disabilities.
And now Lucie has been nominated as Young Person of the Year in the Ealing Gazette's annual Pride in Our People awards by her proud godmother Dawn Ward.
She said: "She's so enthusiastic in everything she does despite her disability and she never lets it hinder her. She does find things difficult but she perseveres and perseveres until she gets there."
Her mother Tracey Fickling said: "The first three months of her life she slept and we couldn't do anything with her because of her heart. She was in hospital for three weeks and slowly progressed.
"She's excelled so much. She loves her gymnastics. She works so hard and she's a determined little girl. It makes me so proud because she has to work so hard to achieve what she does."
Tracey said joining the scouts was a great opportunity for Lucie, who attends Hedgewood Special School in Hayes, to mix with mainstream children.
Love was in the air as students from Weber State University and Ogden High School worked with members of the Morgan/Weber Down Syndrome Foundation to tie heart pillows for the cardiac unit at McKay-Dee Hospital.
The heart pillow project is in its third year. In the past, Scouts have worked with the foundation to create the pillows, but this year WSU student Kaitlyn East worked with students in her small group communication class as well as students in Youthlink, a youth service group. They tied and assembled approximately 140 small heart pillows for patients recovering from heart surgery.
The project not only helps those recovering patients but gives those with special needs the chance to do a little service as well.
“It’s been awesome because so often they have the focus on them and now they get to focus on someone else,” East said of the Down syndrome members.
East was excited about the project when she heard about it because she felt like it helped her community. She said that many Down syndrome individuals can suffer from heart ailments so the pillow project can hit close to home for them.
East and some of her classmates spent about a week cutting the fabric for the pillows so it would be easy to assemble last Friday night.
East’s classmates were glad to pitch in on the project.
“It’s pretty cool and it’s always good to help out other people,” WSU student Frank Otis said as he tied together a fleece heart pillow. He smiled as he watched some of the Down syndrome kids play with some of the pillows that had been tied.
“He’s having a great time,” he said, looking at one of the kids.
Susan McQuivey brings her daughter, who has Down syndrome, to the event each year.
McQuivey’s husband had cancer and often used pillows during his hospital stay for a comfort.
“We don’t like to miss things like this,” she said as she worked with her daughter to tie the pillows.
She also enjoys the time to be around other parents of children with Down syndrome.
“We can all relate and our kids can connect with each other,” she said.
The Weber/Morgan group usually meets once a quarter and she always tries to come. Her daughter is grown and she has noticed it provides support if she shares some of her experiences with the parents of younger children with Down syndrome.
The group had an assembly line going, tying each pillow, then attaching a small card with a picture of one of the members and the saying, “From our hearts to yours.”
Noelle Shaw works for the McKay-Dee Hospital Foundation and helps deliver the pillows to the hospital.
“We love getting things. This is an amazing and fun fundraiser,” she said.
Mallory Griffin’s hands move confidently as she settles her wriggling 4½-month-old baby boy in her lap.
She snuggles him close to her heart, careful not to tangle his feeding tube. Kai calms immediately, his dark eyes fixed on her face.
“Before Kai, I had never changed a diaper,” she said with a laugh. “I was horrible with children.”
Now, the 24-year-old is raising a baby with numerous special needs largely on her own. Her husband, Mulan, is an explosive ordnance disposal technician stationed in Afghanistan.
Griffin, who lives in Bluewater Bay with her mother, has known since the early months of her pregnancy that her son would have extra challenges.
“It was at 18 weeks,” she said. “We were going in to find out the sex … and they were having trouble seeing the other side of his heart.”
Diagnosed with Down syndrome, Kai was born six weeks early on July 15 with an atrioventricular canal defect that allows extra blood to flow from the heart to the lungs, which overworks both organs.
Within days he was flown to Children’s Healthcare of Atlanta, a leading pediatric hospital. Griffin traveled up with family to be near Kai, who eventually was strong enough to have heart surgery Oct. 13.
“Learning to get used to living in a hospital room, that was hard,” she said. “I connected really closely with one of his nurses … and that really helped.”
Sitting on the couch in her mother’s living room, Griffin lifts Kai’s shirt and marvels at the barely visible scar on his baby-smooth chest. He gives her a chubby smile as she pats his tummy.
“It just puts into perspective what’s important,” she said, admitting with that she often just sits and stares at him. “He’s everything now.”
Griffin, a tall blonde with a quick smile, is often amazed at the turn her life has taken in the past year. Before getting pregnant, she was partying her way through Florida State University.
Now, she has a baby in her arms, one who cannot yet suck on a bottle, whose lungs are still healing and who takes several different medications each day.
Her friends tell her she’ll eventually need a break from it all.
“I don’t ever want to take a break,” she said. “It’s amazing. I’m happy sitting on the couch with Kai.”
Griffin finds it hard to believe that not long ago, during the weeks following the Down syndrome diagnosis, she was given the option to terminate the pregnancy.
She never considered it.
“It didn’t matter to me,” she said. “I already loved him so much.”
To combat the constant worry, she educated herself about Down syndrome and what lay ahead. She also relied heavily on her parents, Phillip and Alyson, for support.
But caring for Kai hasn’t been easy. He was on oxygen when he first came home from Atlanta. It’s gone now, but the feeding tube remains, and he must have a pre-digested formula every three hours.
“He’s on a lot of medications to keep everything running smooth,” said Griffin, who travels to Pensacola for Kai’s doctors appointments. “I’m just happy that he’s alive.”
She says the holidays will be sweeter this year because Kai is part of the family.
“I just want to spoil the heck out of him,” Griffin said. “It’s going to be a great Christmas.”
She and other family members, all University of Florida fans, are happily filling up his nursery with memorabilia.
“He has a huge gator collection, so he can have a swamp in his room,” Griffin said.
As Kai continues to grow and improve, she finds herself excited about his future.
“It’s just going to be different (from what I once thought),” she said. “He just blows my mind every day.”
If Kai is stable enough, Griffin wants to move back to Tallahassee next year to finish her bachelor’s degree in studio art. She’s even considering a career in nursing.
“I feel like he’s made me a complete person,” she said. “I need to be the best for him.”
Growing up with a younger brother who has Down syndrome inspired Dr. Eileen Quinn to become a developmental-behavioral pediatrician.
"He's just one of my favorite people, and I felt like I wanted to work with people with disabilities," Dr. Quinn said of her 48-year-old brother, Dan Quinn, who lives in the Detroit area. "It's important for them to get optimal medical care."
So Dr. Quinn was prepared when she and her husband, Dr. Peter Smythe, found out their fourth daughter was going to be born with Down syndrome. Sara's birth seven weeks early with a heart defect was unexpected, but otherwise Dr. Quinn was ready.
"I was the most perfect parent to have a child with Down syndrome, there's no question about it," said Dr. Quinn, a University of Toledo medical school faculty member who works at Mercy Children's Hospital.
Sara underwent heart surgery at 6 months, and now the 13-year-old is a student and athlete at Sylvania's Timberstone Junior High. Someday, Sara hopefully will work and live in the community with some assistance, her mother said.
Showcasing such abilities and raising awareness about Down syndrome is the focus of the 10th annual Buddy Walk held by the Down Syndrome Association of Greater Toledo, an annual event for Sara and her family. Nearly 1,000 people with Down syndrome, their families, friends, and other supporters are expected to take part in the Oct. 2 walk at UT's Rocket Hall.
"I think it's important to have our kids out in the community," Dr. Quinn said. "They're our little ambassadors."
Down syndrome is a chromosomal abnormality affecting more than 350,000 people nationwide. A small percentage have an inherited form of Down syndrome, but that is not the case with Sara, Dr. Quinn said.
Not only does Dr. Quinn help those born with Down syndrome, but she treats babies born with a wide range of birth defects and neurological problems. And, these days, many of the children she sees have autism or other developmental disabilities, the pediatrician said.
Both Dr. Quinn and her mother were near or older than 40 when Sara and her uncle were born, which increases the incidence of Down syndrome, Dr. Quinn said.
Unlike when her brother was born, however, children with Down syndrome are more accepted these days, and they have more medical benefits and opportunities, she said.
When Sara played soccer, the Sylvania Youth Soccer Association allowed her to be an extra player on the field, Dr. Quinn said. That is one example of how groups and schools have made alterations so Sara could participate in activities and classes, she said.
"I just love the little bit of creativity … to include her," Dr. Quinn said, adding that it also helps other children become more tolerant of those with disabilities.
Sara receives educational assistance but attends classes with non-disabled peers at Timberstone, where she is a member of the volleyball team, a sport favored by older sisters Kathryn, Colleen, and Bridget. Swimming is Sara's favorite sport, but she also does karate and is well-versed in volleyball.
"Bump, set, and hit," said Sara, a seventh-grader who pumped her fist every time she hit the ball over the net in a pregame warm-up recently as her parents watched.
Luckily, 11 girls tried out for the 12-member volleyball team, so Sara was able to clinch a spot, Dr. Quinn said. Sara just wanted to be involved and with her friends, said her mother, who wanted her youngest to have fun, get some exercise, and learn teamwork, just like her sisters. "I'm not looking for playing time and for her to be the star," Dr. Quinn said. "She and I are perfectly OK if she cheers most of the time."
While her older daughters have received numerous accolades for both athletics and academics, Dr. Quinn said while watching Sara, "I'm just as proud of that girl over there. She makes the most of what she's got."
The Down Syndrome Guild of Greater Kansas City offered an amazing resource to other DS groups this past week. The group posted a video which chronicles one family's journey before, during and after heart surgery. A local photographer was granted permission to go into the surgical suite to photograph the entire procedure start to finish. Parent reactions and post surgery follow up are compiled into a photo video montage. The award-winning video is being shown in some children's hospitals. Although, some images are graphic, they are all tastefully done.
This is a stressful time for parents and the goal of the video was that some anxiety may be alleviated if they can view the process from start to finish. The group is pleased to share this link with their affiliate friends as they think many of your members could also benefit from viewing the video.
