Kitty Reilly, Trustee & Children’s Liaison Officer, whose son Shea has essential tremor, has taken on the challenge of running two marathons for the NTF. Read her story.

As you all know, life has changed dramatically over the last year, and the two marathons I anticipated running were both postponed. The Edinburgh marathon now is set to take place in May 2021 and things being well, and London will now take place in October 2021. .......so let the training commence.

ImageKitty with her son Shea, who has essential tremor

Kitty with her son Shea, who has essential tremor

As you all know, life has changed dramatically over the last year, and the two marathons I anticipated running were both postponed. The Edinburgh marathon now is set to take place in May 2021 and things being well, and London will now take place in October 2021. .......so let the training commence.

When Shea was born I remember looking at my beautiful boys face and feeling the eternal love fill my body. As a mother, right in that moment all I wanted was for my precious baby boy to be happy and healthy and live a life free from problems.

At around 18 months old I noticed Shea's hands trembling when he was trying to open things, or play with toys. It was at that point I took Shea to the GP for the first time although very little happened as a result. At around three years of age, Shea's tremor seemed to be more obvious, so I went back to the GP. Shea must have been around five when he was then assessed by a neurologist (brain doctor) and underwent several tests including a MRI brain scan. Being a radiographer and knowing exactly the reason for the scan, and the process involved, that didn’t matter, just the thought of my beautiful boy having an anaesthetic (going to sleep) to have his brain assessed was heart breaking.

Following the scan Shea was diagnosed with Essential Tremor (ET for short). I tried to research ET in children and found very little information. I looked for support groups and found nothing. I asked the neurologist if he was aware of any support groups or research and he wasn’t. I did however then come across the National Tremor Foundation (NTF) and contacted a lady, Mary, for some support as at that time we felt very isolated. Mary was great, she understood ET and offered some kind words but there’s was still very little out there to support children with ET, even though I had discovered it was one of the most common neurological conditions in children.

Our real first challenge began when Shea had been prescribed Propranolol to help minimise his tremors. I noticed quite quickly the impact this medication had on Shea. After several months this medication was discontinued as the side effects were causing more issues than the ET. Then came school. I had significant challenges (and still do) getting Shea's teachers to actually understand what difficulties he faced, such as writing (he is left handed also), drawing, cutting and sticking, dressing, undressing, eating and drinking etc not to mention the impact on him holistically with the variety of medications that were tried and the side effects they had.

Shea was very astute though and had developed many self-taught techniques to try and minimise his tremor, such as fixing his legs around the chair to gain more stability, using the Velcro on his coat to fasten it instead of a zip, etc. Today Shea is doing well in school but still experiences difficulties practically and academically. As his mum to see him struggle is hard.

Shea and I know the future will hold challenges and that can sometimes feel upsetting and frustrating. But we are also determined to talk about ET openly and honestly which is why after Shea was diagnosed with ET, I made contact with Professor Findley at NTF and as a result I was asked to be the Children’s Liaison Officer in September 2016. In April 2017 I was asked to become a Trustee of the charity with my primary focus being ET in Children.

I see one of my roles with the NTF is allowing me to develop a support network for children, parents and professionals. This will allow them to access support and advice from likeminded people and to let others know about the condition and the impact on children, adults and their families. I am also extremely passionate about the need to raise awareness and education around essential tremor, particularly in children. I would like to do this by working with schools and health colleagues for a collaborative approach to better support our children with essential tremor.

In a bid to raise awareness of ET and to raise funds for the NTF to continue the great work that it does I will be running not one but two marathons London and Edinburgh Marathon. I’m not a natural runner and I’m not doing this to gain any personal bests, it will be slow and no doubt difficult, however for those who know me they’ll know I have done many things for different charities over the years, but this challenge is personal, it’s for my boy and all the others out there with tremors, of any kind, diagnosed or undiagnosed. The aim is to get people talking, to raise awareness, raise funds and to let people know you aren’t alone.

I’d very much appreciate any donation you are able to make. And if you can’t make one that’s fine, times are hard and I understand. I’d very much appreciate your support by talking about what I am doing and why as that will also make a difference and create change.

Support Kitty on Virgin Money Giving

Support Kitty on Virgin Money Giving https://uk.virginmoneygiving.com/KittyReilly1

Further information