Noah is a noisy, happy, talkative 3-year-old, who loves custard, fancy dress and cheesy Wotsits. Noah has a rare genetic, muscle wasting condition called Spinal Muscular Atrophy (SMA) and attended the Mencap Children’s Centre in Belfast. Noah lives with his Dad, Jonny and Mum Rachael. We talked to Noah and his dad Jonny on how Mencap Northern Ireland has helped them as a family.
Noah was born a healthy baby, he started at nursery at 6 months and my wife and I had gone back out to work. Life was pretty normal. By the time Noah was 8 months old he had started standing and crawling, reaching all the usual milestones for a child his age. We never realised that there was an underlying genetic condition until the week before his first birthday when my wife had started to notice he was getting quite top heavy, his legs were buckling when he was trying to stand up.
Noah was rushed to hospital and 6 weeks later he was diagnosed with SMA, meaning he lost the power to stand and use his arm's. It was a huge shock. When they brought him into theatre and we watched them cut his vest open, it was heart breaking, the doctors and surgeons could not find out what was wrong. Due to the muscle weakness Noah was not swallowing properly and his milk had got into his lungs.Then, following tests he was then diagnosed with Type 1 Spinal Muscular Atrophy.
It was a traumatic six weeks, we were told that many children with Type 1 SMA do not live past 12 months old so that we should prepare for the worst, but Noah battled through and is thriving today.
Noah’s father Jonny said: ‘Noah is a brilliant wee child, he’s the life and soul of our house. We call him Noisy Noah because from the minute he gets up in the morning to the minute he goes to bed at night he doesn’t stop talking which is great. Noah’s favourite thing is Custard and Wotsits, that’s him sorted!’
I put my business up for sale so I could become a stay at home dad for Noah, it was a lot of pressure. I think there has to be a role where someone physically goes out to support parents either at home or in the hospital because when you’re dealing with a diagnosis or when you’re getting out of hospital can be really tough and having someone who can sit with parents and talk through everything would make a huge difference, because you feel so isolated.
A specialist Nurse in the Hospital told us about the Mencap Children’s Centre and after a referral we were able to get Noah a place. When Noah joined Mencap we had to gradually build up his time there because for two years the only person Noah saw was me and his mum. But after two weeks Noah would happily come in to the Children’s Centre and go to the staff, he identified with all of them and felt safe. Next he was coming into the centre with a smile on his face and he just loved it there. He loved his key workers and when I say their names he smiles, he knows who they are and he felt safe there.
When Noah started at the Centre he could only physically take milk pumped in through his peg tube. Now, he eats all sorts of food and he even feeds himself Wotsits, as the staff have worked endlessly to develop this. He comes to Mencap, has his meals, all of his therapies, he even gets out into a standing frame, it’s like a lottery win for us.
Mencap’s Early Years staff also have him painting, using the multi-sensory room, interacting with other kids and other adults, that’s what Noah really needs. I know when I leave him here that I can relax and go somewhere else and have some me time, it’s great.
"Mencap has been our lottery win, it’s been our lifeline. They have built my sons confidence, my confidence and my wife’s to the point where she felt able to go back to work and realise that Noah was in safe hands and that he was learning at Mencap. I was also in a better place where I felt I could get my life back on track, the staff and the friends that we have made in Mencap made all the difference."