Read Collette's story & join her #doit4mencap this year!
01 January 2016
Colette Stewart lives in Belfast with her husband Paul and children Emily and Harry. Born a bouncing baby boy, little Harry soon developed a series of life changing health issues which caused his parents to feel very alone. In 2016, Colette is running the marathon for Mencap. This is why…
I still remember that day - staring out the window convinced the consultant was talking about someone else when she told us Harry had a deletion on the fifteenth chromosome - overnight we went from having a GP and a health visitor to a team of ten specialists working with Harry.
We were told Harry may not walk or talk, and at this point we thought he may not even reach his first birthday. Our lives crashed around us.
At four months, Harry was very sick. He was difficult to feed and couldn’t keep on weight. What of my dreams for him? I wanted him to play rugby, eat mud, drive his sister crazy and play with worms – you know, like everyone else’s children?
For nine days, Harry was in intensive care battling Bronchiolitis and Pseudomonas. On a subsequent admission doctors began to mention things like Muscular Dystrophy, then I realised this was life changing. As well as this, surgery was necessary to untangle his heart from his wind and food pipes, allowing him to develop physically.
When we were told no one else had the same chromosome condition as Harry, we felt absolute loneliness. This was compounded by the news Harry was on the waiting list for the Mencap Nursery. While we had been focussed on keeping him alive, the fact he had a learning disability had kind of slipped us by in the whirlwind of surgery and recovery.
Very quickly, I realised, through talking to other mums at introductory coffee mornings, that Harry was very lucky to get this vital early intervention work.
I cried in the car park on his first day, but now when I look back, I know Harry won a ‘Golden Ticket’- the Mencap staff were amazing – they didn’t care about Harry's diagnosis and instead, they just focussed on what Harry needed to help him develop.
Harry soon learned Makaton sign language and when he first signed for food and drink, we knew a huge communication milestone had been reached.
As parents, we got enormous support – especially as we both had to work – and the therapies Harry received at Mencap were very beneficial. As well as that, we’ve all gained new friends.
On his last day at the Mencap Nursery, Harry walked confidently out of the building – yes – he can walk!
We all looked back and waved goodbye and Paul and I reflected on how much we all loved it there.
Harry has now moved onto pre-school and doing very well – and he’s even managed to take on the important job of driving his sister crazy – just as I had dreamed.