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鈥檇 been with Rayne鈥檚 dad, Dylan, for about 9 months and wasn鈥檛 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鈥檛 walking and now wasn鈥檛 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 .
Absorbing Rayne's diagnosis
I鈥檇 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鈥檇 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鈥檇 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鈥檇 known instinctively for so long that something was wrong with Rayne, but felt I wasn鈥檛 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鈥檓 someone who doesn鈥檛 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 , a charity for young mothers where I鈥檓 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鈥檛 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鈥檚 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鈥檚 because there are so many things he can鈥檛 do, he鈥檚 making the most of the things he can do.
Because he was so vocal, this has helped us to bond even more. I鈥檝e 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鈥檛 get distracted and just spend time talking.
I鈥檝e also talked to him about his disability and explained that it鈥檚 OK to be different. He does ask why he鈥檚 in a wheelchair and why he can鈥檛 walk, but hopefully he鈥檒l 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鈥檚 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鈥檚 never been at nursery and hasn鈥檛 started school yet so we鈥檝e 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鈥檛 limit your child because of their disability and I鈥檇 totally agree. Rayne is now having treatment to preserve the muscle he has left and so far, it鈥檚 going really well. He can now do his commando-style crawl again. The specialists say they don鈥檛 want to give us expectations that he鈥檒l ever be able to walk but they're making a difference in lots of little ways. For example, he鈥檚 not falling over as much when he鈥檚 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鈥檙e 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鈥檙e doing. Having a disability doesn鈥檛 change your child as a person. We don鈥檛 look at Rayne differently because of his condition. We can鈥檛 imagine him without it and we鈥檒l never let it take over.
Kym鈥檚 top tips
- Trust your instincts
You know your child better than anyone. If you feel like something is wrong, don鈥檛 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鈥檚 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鈥檇 taken the support that was offered to me by the healthcare professionals and those around me. At the time I didn鈥檛 think I needed it. I can see now that it would have really helped.
- Don鈥檛 let a disability define your child
It isn鈥檛 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 成人论坛 Action Line for details of organisations that can help.
For information about SMA, check out .
