Select Page

Real Lives

The power of our impact is most clearly illustrated in the stories from real people’s lives where a difference has been made. We love hearing real life stories, see how DSA programmes have made a change to the lives of people who have Down’s syndrome below.

Helpline & Information Centre

Expand

Andrew ran the London Marathon for us in 2019 and says his family is “absolutely indebted to” the DSA. Andrew and his wife Denise were living in Saudi Arabia when their first daughter Kathleen was born 20 years ago. Kathleen was diagnosed with Down’s syndrome shortly after birth and the family felt very isolated and alone. After finding out about the DSA through a German friend, they faxed the UK charity and 10 days later, received a full pack of information about the condition.

“That information was a godsend to us. It was full of information Kathleen and us so desperately needed. Without the DSA, I’m not sure how we would have coped but one thing is sure, we wouldn’t have coped as well as we have.”

Kathleen, who is now 19, has gone on to model in Paris, represented brands such as River Island, attended London Fashion Week and addressed the UN in Geneva about her life with Down’s syndrome. She’s bilingual, has a long-term boyfriend, and is currently studying at performing arts college in London. Andrew says the DSA has been pivotal in making sure people with Down’s syndrome live full and rewarding lives.

“Thanks to them, their research and studies, their reaching out – not only in the UK but all over the world – they’re spreading awareness, their shifting perspectives, their continuous endeavour to lift prejudices, individuals with Down’s syndrome and their families now have HOPE and a VISION for a better future.”

Lifelong Support

Expand

Christopher’s Story…by his mum, Mary

I was told that Christopher has Down’s syndrome within hours of his birth. At that time, what I knew about Down’s syndrome would have fitted on the back of a postage stamp. The hospital had no literature to give me on the subject so their health visitor contacted the Down’s Syndrome Association who sent us a copy of their new parents’ pack. That was my first contact with the DSA. It was the start of a long relationship that’s lasted 20 years so far.

In my son’s early years I attended any DSA conference or talk about development and the preschool years that I could get to. I was hungry for as much information and knowledge as possible to enable me and my husband to offer as much support and opportunity to Christopher. During his school years, Christopher attended mainstream and specialist schools. While he was at our local primary school, I contacted the DSA Helpline for advice about his educational statement and issues with my local education authority. The advice they gave me forced an immediate response from the chief executive of the education authority and his caseworker.

The matter was resolved promptly. I only wished I had contacted the DSA sooner. Christopher left school with a mixture of academic and vocational qualifications, far exceeding our expectations. When my son was in his teens the DSA’s DSActive project contacted us to let us know that Moorside Rangers was going to be setting up a new football team for players with Down’s syndrome. Christopher has played as a defender for this team ever since. He’d never been interested before in playing football but now he loves it. Playing a game alongside his team mates of a similar ability gives him a real buzz.

Christopher’s even gone on to complete his Level 1 coaching certificate and assists the coaching staff with the junior team. How amazing is that! Attending the annual DSActive National Festival is a must on our calendar every year. Christopher: “DSActive makes me feel proud to have Down’s syndrome. At Moorside Rangers I play with other amazing people like myself”. As Christopher approached his adult years I contacted Alison from the DSA’s Workfit programme. This has probably been one of the best things we’ve ever done for him. It has truly transformed his life. It wiped away all anxieties that parents have about their child leaving school.

He successfully completed a 16-week work experience placement as a Leisure Service assistant and the role has now become permanent. His colleagues love having him on the team and his managers say that he has brought out the best in the staff. Christopher is extremely proud to tell you that he is now a working man. I don’t know what I would have done over the years if I had not had the guidance and support of the DSA. I certainly don’t feel that Christopher would have had all the opportunities in life that he has had. Long may the Down’s Syndrome Association continue!

Having a Voice

Ellie is a member of one of our Having A Voice® groups. In 2017 she went to New York to represent the DSA at the United Nations on World Down Syndrome Day with this presentation.

She shared her powerful message with the world. Afterwards, she summed up how the experience had been for her.

WorkFit®

Chris works at his local Dunelm store as a Café Assistant. WorkFit helped him get the position and continues to offer support to both Chris’s parents and his employer.

DSActive

Perry has played with the DSActive club The Charlton UpBeats since 2008. He now helps coach the younger members of the club and his sister has joined the team as a volunteer coach