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'Be yourself and follow your dreams' - life with Down's syndrome

Keiron Tourish
BBC News NI north west reporter
BBC James Martin smiling at the camera. He has shirt brown hair, wearing a dark blue blazer, pink shirt and pink and navy tie. A hedge, grass and daffodils are in the background.BBC
Oscar winning actor Dr James Martin MBE launched a research project into Down's syndrome at Ulster University

"Be yourself and follow your dreams."

That is the message from actor Dr James Martin MBE, who appeared in the Oscar-winning An Irish Goodbye, as he launched an important research project into Down's syndrome at Ulster University.

It is hoped it will identify areas where more support is needed for those living with the condition.

The five year research project is called 'My Life with Down Syndrome' and it will look at lifestyle from birth through to adulthood.

James Martin said it is important people take part.

"I have two of my friends who would have health problems and they have Down's syndrome too," James told BBC News NI.

"I don't really have a heart problem myself. And it's nice to see what their experience of life is."

James is an honorary Ulster University graduate and said it was important that young people with Down's syndrome continued to be listened to and supported.

"I found my thing was drama. I'm an actor," he said.

"Yes I've an honorary doctorate and an MBE so all that is really nice, but if it wasn't for these charities in lockdown and during Covid we'd be snookered.

"So, its going to be nice to know what it's going to be like in the next 15 years."

Professor Frank Casey. He has greyish receding hair, wearing black glasses a blue blazer, light blue shirt and yellow tie.
Professor Frank Casey, who is leading the research, said there was a need to further improve antenatal detection of Down's syndrome

How many people in NI have Down's syndrome?

The university said more than 1,450 people were born with the genetic condition between 1990 and 2023 in Northern Ireland.

The project will examine the health, wellbeing and development of children, young people, and adults in Northern Ireland with Down's syndrome.

It will engage directly with people with Down's syndrome, their families and carers, to address current deficits in provision.

Professor Frank Casey, who is leading the research, said there was a need to further improve antenatal detection of Down's syndrome and examine the lack of co-ordination between the services that provide care for people.

It would look at access to suitable educational and employment opportunities.

Professor Suzanne Martin and Ivan Martin. Suzanne has blonde shoulder-length hair, wearing a black jacket, black top and lanyard. Ivan has white hair and beard, wearing a black blazer, blue shirt and pink and blue check tie. Other people are sitting in the background.
James' parents Suzanne and Ivan say there are a lot of challenges but that children with Down's syndrome have come a long way over the years

Ivan Martin, the well known broadcaster who is the father of James, said there are challenges with children "of any type of personality".

"Everybody has their challenges. We got our shock in the delivery room when this wee fella arrived 33 years ago and here he is and he had Down's syndrome," Mr Martin said.

"From day one we decided that anything he wanted to do, we would let him try it."

His son tried football, rugby, taekwondo and gymnastics but he really loved acting.

James' mother, Professor Suzanne Martin, said there were "a lot of tears along the way" as James visited hospitals and social workers, particularly when he was very young.

"School is difficult as well. All of that statementing process is very difficult so there are, what we would refer to as transition times, and at each transition time you are faced with a lot of decisions and a lot of trauma in some ways because it's not an easy path," Prof Martin said.

However she said the change brought in by the 1987 Education Act which offered children the opportunity to go to school was clear to see.

"I think the measure of the impact of that is so clear in the life of James and his friends, most of whom are in gainful employment, some of whom live on their own, and that's in one generation," Prof Martin added.

"Frank and his team working in this way is fantastic, and supported by the Department of Heath to do this is really good to see."

What is Down's syndrome?

People with Down's syndrome are born with an extra chromosome, usually by chance due to a change in the sperm or egg before birth.

There are estimated to be about 47,000 people with Down's syndrome in the UK.