disability living allowance for Arthur and not for Alfie

from the Lancashire Evening Post:
The 10-months-old brothers, who have identical medical problems and need the same round-the-clock care, became instant TV and newspaper stars after their plight was featured in yesterday’s LEP.
Yet despite all the press attention, officials at the Department of Work and Pensions were showing no signs of budging over their payment of disability living allowance for Arthur and not for Alfie.
“We haven’t heard a word from them yet,” said dad David. “They must know this case is ridiculous. All we are asking for is a bit of fairness.”
The national media descended on the Banks-Lowe household when the story of the twins’ case hit the newstands near their home in Wesham near Kirkham.
David admitted: “I had to come home from work in the afternoon because there were so many press here knocking on the door.
“It has gone totally crazy. The story on Facebook had something like 51,000 shares within a matter of hours.
“The benefits issue is quite a hot one at the moment with all the rejigging that has been going on. And then a ridiculous case like this comes along and it obviously caught the media’s attention.
“No-one we have spoken to can quite believe what has happened with Arthur and Alfie.”
The boys were born one minute apart and have exactly the same medical issues and care needs. They have daily physio sessions, attend hospitals and clinics regularly for heart, lung and eye problems and their breathing has to be monitored during the night.
Yet one officer at the benefits department at Warbreck House in Blackpool judged Alfie did not need any more care than other children of his age. Meanwhile an identical application for his twin Arthur was granted without question.
“It’s worrying for other people applying for this allowance because it shouldn’t be a lottery who you get to deal with your case.”
A spokesman for the disabled charity Scope said: “Parents tell us they have to fight battle after battle to get the right support for their children. But this is one of the worst examples we’ve heard.
“Everyday life costs more if you’ve got a disabled child. In the current climate that makes disability living allowance a real life-line.
“How can it be right that of two identical twins living in the same household, one is eligible for DLA and the other is not? This suggests that the system is a complete lottery, which depends on who is assessing your application.”

German TV host Kai Pflaume is on a mission - he wants to raise awareness for people with trisomy 21

from DW:
An estimated 50,000 people live with Down syndrome in Germany, and many of them feel marginalized in their everyday lives. Now a famous German TV host is working to raise awareness for them.

German TV host Kai Pflaume is on a mission - he wants to raise awareness for people with trisomy 21, or Down syndrome. In a new four-part TV series to be broadcast in June on Germany's main network ARD, he visits people living with Down syndrome and provides insight into their everyday lives. Called "Show Me Your World," the project aims to show how people with Down syndrome can live very normal lives.
Happy in their own world
Down syndrome is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21, hence the name trisomy 21. Since the strength of this disability can vary, many people with Down syndrome live completely normal lives with their families, while others need more help.
Support is provided for them and their relatives by the German Down Syndrome Network, whose chairman is Heinz Joachim Schmitz. He often notices how people without a disability react when they meet someone with trisomy 21. "At first, they're a little afraid," he said. "They take two steps back, then three steps forward - once they've made contact with them."
That's because people with Down syndrome are often noticeably cheerful, with fewer hang-ups than others. "They have their own world, and are settled and happy inside it," said Schmitz, who thinks it's a shame that so many have such a stand-offish initial reaction. "People with Down syndrome belong to our society, and should not be marginalized."

Helen Mirren gives royal welcome to boy with Down syndrome and terminal cancer

by Randee Dawn from Today:
Dame Helen Mirren all by herself is pretty terrific. But put the 70-year-old Oscar winner in the outfit of the Queen, and she wears it like a superhero.
Recently, she stormed outside mid-performance of her London show "The Audience" (in which she plays Queen Elizabeth II) to unload on noisy drummers (and later publicly wore a handmade T-shirt supporting their cause). But her latest deed goes one step further: Last week, she agreed to have tea with 10-year-old Oliver Burton, who has Down syndrome and has been battling cancer for much of his short life.
Burton was diagnosed with leukemia in 2006, and was recently given a terminal diagnosis, according to a Facebook page set up to support him. But he had one dying wish: To have afternoon tea with the Queen and visit Buckingham Palace, as reported by the Leicester Mercury.
A national trust designed to support cancer-stricken children requested the actual Queen Elizabeth II -- who couldn't work it into her schedule.
So Mirren stepped forward to invite him to the Gielgud Theatre to see her play the Queen -- and invited him backstage to share tea and cake and to meet the corgis who star in the play with her. There were even footmen.And naturally, she was in costume the entire time.
"Our incredibly brave Ollie has Tea with The Queen!" the National/Regional Children's Tumor Leukaemia and Cancer Trust posted on their page.
His mother Catherine told the Mercury, "Dame Helen was brilliant. She stayed in character the whole time and spent a lot of time talking to Oliver and drawing him out of himself. She signed his British flag, which he waves all the time."
She also knighted him, with her hand. Now, that's royal behavior.

Newark man goes 'Over the Edge' for Special Olympics

from the Newark Post Online:

Jonathan Stoklosa, a Special Olympics athlete from Newark, participated in the Over the Edge event on May 8 to raise money for Special Olympics Delaware.

Nearly 100 people rappelled 17 stories (221 feet) down the 300 Delaware Avenue building in Wilmington to raise more than $130,000.

Stoklosa was the first Special Olympics athlete to participate in the event's three-year history.

Disability Doesn't Even Slow Down Bridget Brown

From being the first student with Down syndrome mainstreamed in her school district to starting her own advocacy organization, Bridget Brown's journeys are far and wide

Living like a movie star for a week, Bridget Brown of Darien had a small part in a movie with Miley Cyrus. Brown also has her own consulting business, works as a dental assistant’s assistant and has many more jobs in life few of us would ever conquer. 

Having Down syndrome, the 27-year-old woman is considered to be disabled, but you would never know by the full life she leads.

Brown was the first person with a disability included in her school district and is a strong advocate of inclusion. Among her dislikes is hearing someone be insulted.

"Don’t call people retarded," Brown says. "I got called that, I was angry and wanted to cry.”   

Another fight Brown goes up against is mothers who want to abort their babies when they find out the baby has Down syndrome.

"Think of other options," she says. "Have the child. There are many couples that would take a child with Down syndrome. There are support groups. One is the National Association of Down Syndrome. I will even talk to you if you are thinking of getting rid of the baby. Give it a try. Then adopt."

Bridget and her mom, Nancy, are best friends. 

"When I see my mom," Brown explains, "I’m reminded of my grandma. I can tell how much love my grandparents had and I wanted that."

Q. What’s the biggest challenge you’ve faced?

A. My biggest challenge is learning to live a full life with a disability and being an advocate for myself and for others. 

Hotel bans 'annoying' kids with Down syndrome

by Steve Tallantyre from The Local (Spain's News in English):
Spain's leading Down syndrome association has slammed a hotel for turning away a group of children with the condition 'in case they annoyed' other guests.
A reservation for a group of children with Down syndrome, who were to celebrate an end-of-term trip, was refused by an Almeria hotel hotel on the grounds that "these kinds of people might annoy other guests".
Management of the Hotel CaboGata Plaza Suites, of the ZT Hotels group, have apologized for the gaffe but the case has now been passed to Almeria's public prosecutor according to Spanish daily El País.
A worker from Down España asked a travel agent to get prices from three nearby hotels in order to organize an end-of-term trip for the children, who attend a school run by the association.
One of them, CaboGata Plaza Suites,  responded by saying, "We do not admit groups of guests with mental disabilities," because, "this has happened before."
The association reported the incident to the public prosecutor because it felt that there was "a clear case of discrimination against disabled people that breaks the International Convention on the Rights of Persons with Disabilities, ratified by Spain."
The convention prohibits "all discrimination on the grounds of disability".
This is not the first case of its type in Spain, according to Down España.
A nightclub in Sabadell and a pub in Alicante have both been prosecuted in recent years for refusing access to people with Down syndrome.
In 2009 a parish priest refused to give First Communion to a girl in Barcelona, saying that she was already "one of God's angels".
"We haven't gone public with this incident to victimize anyone but to educate the public," said Agustín Matía, head of Down España.
Sources from the hotel have apologized to the association, saying that the incident had been "a misunderstanding" and claiming that hotel staff had believed they were dealing with a group of former hotel guests with a different mental disability whose visit had been "very confrontational".
Hotel management claim that staff have been "deeply affected" by the incident which has led to a wave of criticism on social media networks.
They added: "In 35 years of business we have never refused access to guests with Down syndrome," who they said, "have been, are, and always will be very welcome."
Down España advised that families encountering any type of discrimination should demand a complaint form to record the details before contacting the public prosecutor.

Steve Tallantyre (news@thelocal.es)

Boy with Down syndrome kicks his cancer and brings smiles

from MSN Now:
This has to be the happy snapshot of the day. It's a photo of a young boy with Down syndrome and cancer celebrating the end of chemotherapy. Less than a day after it was uploaded to Reddit by user Kjr567, it had been viewed almost 837,000 times. "This picture has single-handedly made me feel the happiest I've felt for a long time. Thank you for posting it; and I wish that little man every possible success in his future," wrote one Reddit user. Kjr567 claims to be a family friend of the happy boy and said he's "always smiling." And now, thanks to his picture, we are too.  [Source]

At Disney Social Media Moms event, the small things made the event truly special

by Eliana Tardio from babble.com:

I’m very grateful for having been invited to the Disney Social Media Moms event this year. I wasn’t sure if I would be able to make it by myself with my two kiddos, but everything went great and actually much better than I planned!

The event was beautiful and we really enjoyed the family time. The second night, we were delighted with a beautiful dinner at Hollywood Studios, but the moment that made my day was when my daughter saw Minnie Mouse walking on the red carpet. She was holding her Minnie doll, so after watching Minnie walking, she turned to me and asked: “Mom, is that Minnie?” I said “yes” and then she said: “But, this is Minnie!” gesturing to her doll in her arms.

National Down Syndrome Society Luncheon Honors Hoda Kotb, Raises $125,000

by Stephanie Webber from ology.com:
The National Down Syndrome Society (NDSS) had its annual Spring Luncheon in New York City Tuesday afternoon, giving a warm welcome to Today Show Co-Host and Dateline Correspondent Hoda Kotb as its honored guest. Joined by self-advocate Jordyn Dannenbaum as well as many other family, friends, and supporters of the campaign, the event delivered inspiring speeches and raised an astounding $125,000. 
"This is one of those things that you don't really know why you are being honored because there's a huge room filled with rock stars. I mean I was sitting next to Jordyn the whole time, who got honored today. I just felt so lucky to be next to her. To be honored by the group is just terrific," Kotb said of the event. "I actually have an aunt—my mom's sister who's like her favorite sister and I was named after her—my mom's sister has Down syndrome. So its one of those things when you meet someone with Down syndrome all you want is a fraction of their light, of their happiness, of their joy. You hope you can carry on a legacy like that and you realize that you have a lot of shadows in your heart when you meet people who don't. And I think that's what I really took away from it."
The NBC Today Co-Host and Correspondent wrote a speech for the crowd, took pictures with those honored, and was also joined by NDSS Goodwill Ambassador Chris Burke, who played Corky on the TV series Life Goes On.
"I still don't know why I was so lucky enough to be honored, but I do know that was a room full of people that just filled me up and I feel really, really, really privileged."

Echevarne to distribute Natera's non-invasive prenatal screening test in Spain

from News-Medical.net:
Natera, a leading innovator in prenatal genetic testing, and Echevarne, a leading clinical analysis laboratory in Spain, today announced the signing of a distribution agreement for Echevarne to offer Natera's non-invasive prenatal screening test (NIPT), Panorama™, through its facilities in Spain. Panorama was launched in March 2013 for the detection of trisomy 21 (Down syndrome), trisomy 18 (Edwards syndrome), trisomy 13 (Patau syndrome) and select sex chromosome abnormalities, such as monosomy X (Turner's syndrome).

Panorama uses a simple blood draw from the mother, examines cell-free DNA found in maternal blood originating from both mother and fetus, and can be performed within the first trimester of pregnancy, as early as nine weeks, without any risk to the fetus. Panorama's technology analyzes, in a single reaction, 19,500 single nucleotide polymorphisms (SNPs), which are the most informative portions of an individual's DNA. It utilizes the NATUS [Next-generation Aneuploidy Testing Using SNPs] algorithm, an advanced version of Natera's proprietary informatics.