Collette Stewart's Story
I still remember that day – staring out the window convinced the consultant was talking about someone else when he 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 all around us.
We were told Harry wouldn’t walk – or talk – he may not even reach his first birthday, they said. Our lives crashed around us.
At four months, he was very sick and difficult to feed - he 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?
He spent nine days in intensive care battling Bronchitis and Pseudomonas but when the doctors began to mention things like Muscular Dystrophy, I realised this was life changing. On top of 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 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 focussed on keeping him alive, the fact he had a learning disability had slipped us by in a whirlwind of surgery and recovery.
I realised very quickly, through talking to other mums at Mencap’s 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 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.