Laura is the mother of Kayden, who has ataxia. She shares about her son’s early diagnosis, and the impact of the lack of specialist care has had on Kayden and the whole family.
“Kayden is eight years old, he’s really tall for his age and he’s full of laughter. He likes cooking and all the typical boy stuff such as Lego, trains and play fighting!
From an early age I realised Kayden wasn’t meeting his milestones, but I was told every child is different and I should be patient. By the time he was two, professionals were in agreement that something wasn’t quite right. One afternoon I received a telephone call from his consultant’s secretary. I was asked to go to the hospital the next day and take my family with me. I knew this wasn’t good!
However, nothing could prepare me for what I was about to hear: “we have the results of Kayden’s brain scan, we think your child’s brain is shrinking and feel he’s lucky to have even lived past two years.”
I felt completely numb. I don’t know how I got through that year. I felt like we were living on borrowed time; I was torn apart with how to parent my child. Finding that fine line between discipline and appreciating every day was hard for him.
It took three years until Kayden got an official diagnosis of cerebellar ataxia. Finally, I had a name and could find out more about his condition! Only when I started searching did I realise how rare this condition was. It was only Ataxia UK who had any useful information and gave me some hope. Through them I’m now in contact with other parents I can share my worries and ideas with which is a huge help.
Care for children with cerebellar ataxia
With no hesitation, I signed away Kayden’s blood for use in any research possible. We’ve been pretty much left on our own since diagnosis. There are no specialist ataxia services in our area and indeed some professionals we’ve seen have even asked me what ataxia is!
At the moment Kayden understands that he has wobbles but he doesn’t really understand the bigger impact ataxia will have on his life. He still aspires to be a rugby player or join the army one day.
We always encourage Kayden to have a go and do his best, but this isn’t without difficulties. The tears when he can’t keep up; the sheer frustration when he can’t physically get it right; the little lies we have to tell (the rugby club having no spaces, for example: they did helpfully offer a space for wheelchair rugby, but he’s worse coordinating the chair than when he tries to run).
Every aspect of daily life is affected, only people who know Kayden well can fully understand his speech, which means I often have to repeat what he has said which is annoying for anyone, let alone an eight year old who wants to be independent.
Impacting the family
Kayden’s sister Kyarna is six months old. With the lack of research around ataxia we don’t know how likely it is that she will have it also. Kayden dotes on her and is the perfect big brother and loves to do everything he can for his sister, although this also has its challenges. We dare not leave her on the floor in case he falls on her. He’s not currently allowed to pick her up without close supervision and I think it’s safe to say that he’s resigned himself to needing help with nappy changes!
To go to the shop, Kayden has to hold onto the handle of my wheelchair. You can only imagine the amount of times he’s wobbled in front of the wheels. Although despite his own difficulties, he’s always keen to help; though it’s a little terrifying for myself when he decides to give me a push!
A Specialist Ataxia Centre for children would take all of this stress away and provide focus for things like speech therapy and physio. It would also make us feel less isolated. A breakthrough in ataxia would take some of the constant worry away and most importantly it would allow Kayden to follow his dreams.