Kym, 19, is mum to 4-year-old Rayne. He was diagnosed with Type 2 Spinal Muscular Atrophy (SMA) in 2018. Here, Kym shares her experiences and her advice for other parents.
I found out I was pregnant when I was 14. I’d been with Rayne’s dad, Dylan, for about 9 months and wasn’t nervous at all about having a baby. It was a normal pregnancy: everything looked fine on all the scans and routine blood tests.
And up until he was about 8 months old, everything seemed fine with Rayne. He sat up unaided and knew how to roll. By 9 months, he could commando crawl. But we knew something was wrong because he showed no interest in standing or walking. I started bringing my concerns up with the health visitor, but was told he could just be a lazy baby and to leave it until he was 18 months. At that point, when he still wasn’t walking and now wasn’t even able to do the crawl that he had done a few months earlier, we were referred to a paediatrician. They said straight away that something was wrong. He had very delayed reflexes and, at a specialist appointment a few months later, he was diagnosed with Spinal Muscular Atrophy.
Absorbing Rayne's diagnosis
I’d taken my mum with me to the appointment and she burst into tears as they said that his future was undetermined. My whole body froze and I asked what that meant. It was worse than I’d imagined: SMA is a genetic condition that makes your muscles weaker. They said Rayne was probably never going to walk or crawl and that he would deteriorate over time. I just felt numb as they explained he’d get full body muscle weakness and might not be able to sit up, eat or even breathe on his own.
In a strange way it was a relief to finally have an answer.
I’d known instinctively for so long that something was wrong with Rayne, but felt I wasn’t listened to because of my age. But hearing the diagnosis was terrifying and I had no idea what I was meant to do next.
I was offered lots of advice and support from health professionals. But at the time I was stubborn and said no, even though deep down I knew I needed it. I’m someone who doesn’t like to ask for help but in hindsight, I wish I had.
Finding support and educating myself
Instead, I started reading everything I could about SMA, about raising a child with disabilities and what to expect. I went to sessions at Bright Futures, a charity for young mothers where I’m now a mentor, and they organised free courses for me. This is something I'd recommend to anyone who has a child with disabilities.
Educate yourself about their condition and how it affects your child. It helps you understand them more.
Rayne wasn’t very confident when he was younger and I think that was mainly because his muscle weakness meant he would fall a lot. But I'd always make a point of telling him it's wasn't his fault and it’s because of his condition.
Strengthening our bond
These days I'd describe Rayne as a social butterfly. He loves meeting new people and talking to them. He started talking before he was 1 and now, at 4 is using whole sentences and starting to read words.
I think that’s because there are so many things he can’t do, he’s making the most of the things he can do.
Because he was so vocal, this has helped us to bond even more. I’ve always chatted away to him and he loves taking our dog for a walk or going for picnics. I make sure we put away all the phones and tablets so we don’t get distracted and just spend time talking.
I’ve also talked to him about his disability and explained that it’s OK to be different. He does ask why he’s in a wheelchair and why he can’t walk, but hopefully he’ll never resent being disabled.
Having fun together
He loves cars and trucks and will happily tell you all about his toys! We also play a lot of games together. His favourite at the moment is one he’s learnt at his physiotherapy sessions: we sit on opposite sides of the room and roll a ball to each other. He also loves drawing games where I draw a shape and then he does the same.
When he was younger I took him to groups at Bright Futures, so we could meet other mums and their babies. He’s never been at nursery and hasn’t started school yet so we’ve spent every day together. That's really helped build the bond between us.
He knows I love spending time with him.
On a learning curve as parents
Healthcare professionals recommend you don’t limit your child because of their disability and I’d totally agree. Rayne is now having treatment to preserve the muscle he has left and so far, it’s going really well. He can now do his commando-style crawl again. The specialists say they don’t want to give us expectations that he’ll ever be able to walk but they're making a difference in lots of little ways. For example, he’s not falling over as much when he’s sitting down, something he was doing all the time before the treatment started.
Me and Dylan are now engaged and planning to get married very soon.
We are a support network for each other and we’re learning together about how to raise a child with disabilities.
I went on a huge learning curve when Rayne was first diagnosed but now I feel confident that we know what we’re doing. Having a disability doesn’t change your child as a person. We don’t look at Rayne differently because of his condition. We can’t imagine him without it and we’ll never let it take over.
Kym’s top tips
- Trust your instincts
You know your child better than anyone. If you feel like something is wrong, don’t give up until you get the help you need.
- Do your research
But be mindful of what you are reading and the fact that it’s going to bring up the worst possible cases. Always take what you read with a pinch of salt.
- Accept support
Looking back, I wish I’d taken the support that was offered to me by the healthcare professionals and those around me. At the time I didn’t think I needed it. I can see now that it would have really helped.
- Don’t let a disability define your child
It isn’t going to change your child as a person. Instead it becomes a part of them.
Further help
If you need support on pregnancy related issues, check out the BBC Action Line for details of organisations that can help.
For information about SMA, check out Spinal Muscular Atrophy UK's advice pages.
