Category: Ataxia UK

Posted on 17.11.2020

Kieran, has faced the challenges of lockdown head-on, with Mum Leeann doing her best to keep up with him!  Friedreich’s Ataxia (FA) means that Kieran’s coordination, balance and strength is compromised, so deciding to embark on a fundraising cycle ride of 70km in a month was quite a challenge to take on.

Leeann explains how it came about: “We’d been set to take part in the Superhero Series Triathlon to support Ataxia UK, but with that cancelled, Kieran suggested the ‘at home’ challenge, meaning he’d need to cycle his recumbent bike around 2.5km each day.  We’d spent weeks shielding and I could see the lack of exercise and fresh air was having an effect on us both.  We started to get up early and be out in the quiet country lane behind our house by 6.30am – it gave us both something to get up for.” *

Kieran was diagnosed aged six, after nearly three years of concerns, raised by Leeann, teachers and gymnastics coaches – FA is hard to diagnose and can be misdiagnosed as other conditions.

“When Kieran was four, I noticed he didn’t have the same stamina as his cousins who were the same age.  Within weeks of me signing him up to do gymnastics, the coach commented on his lack of coordination and said that they were concerned.  I took him to see the GP and then asked for a second opinion from a paediatrician who sent him for X-rays, a CT scan and blood tests which all came back negative.   But after a few months of physiotherapy and a review, we were discharged.”

Leeann’s concerns continued, but with a sign-off from the hospital, she felt reassured.  In Year 1 at school, his class teacher noticed him falling more and bumping into furniture which prompted a return to hospital for more tests which again were inconclusive.  But an electric nerve conduction test revealed problems with Kieran’s nerves sending messages through his body and a final diagnosis of Friedrich’s Ataxia was confirmed.

“It came as a complete shock, the more I read the more petrified I became.  At this point, the clinicians who had diagnosed Kieran hadn’t actually had any patients with FA nor knew any families around the area – I felt totally alone.”  Leeann then found Ataxia UK and attended their conference, where she met other families and joined online support groups.  “I realised that anything is possible – my mission now is to provide Kieran with everything he needs to help make his life easier, to live his best life and have as much fun as possible.”

Lockdown has meant that Kieran has missed out on his regular appointments with specialists, physiotherapists and occupational health as well as activities that form a vital part of his physical and mental wellbeing. “He has missed out on six months of swimming, gymnastics and horse-riding lessons which are imperative to keeping him fit and active.  Also, just not being at school every day on his feet, using his walker, has meant there’s been a severe decline in his mobility,” says Leeann.

Kieran has felt frustration, sadness and anger at being unable to see his friends, cousins and especially his grandparents.  With just the two of them at home, it’s been particularly tough: “We are very close but being with each other 24/7 has been difficult,” says Leeann.

“Knowing that as each week passes, Kieran’s mobility is deteriorating, the stress of not seeing his physio, chasing appointments, trying to get supermarket deliveries, issues with his orthotic boots and electric wheelchair and trying to get our first wheelchair accessible vehicle has been exhausting.”

Now Leeann is looking towards the next few months and adjusting to the new way of coping with the continuing presence of Covid-19.  “I am still very cautious about being around other people – I feel like I want a very long poking stick to keep people away from us.  The pandemic has affected so much of our life – trying to organise specialist equipment and services is difficult enough as it is but Covid-19 has made is so much more difficult with the services we rely on being so badly affected by lockdown.  I feel like people with disabilities have been pushed to the side.”

Kieran and Leeann’s amazing strength and resolve is remarkable, and as we all know, a return to ‘normal’ seems some way off, but with the support of Ataxia UK, funded in part by Childlife’s incredible supporters, they know they are not alone. 

* Kieran has so far raised over £2,700 for Ataxia UK through his amazing bike ride.  If you would like to support his amazing efforts, you can do so here:

Leeann would like to say a special ‘thank you’ to everyone who has supported them: “We both really appreciate all your love, kind words and support and generous donations from family and friends to complete strangers and also the anonymous donations, we don’t know who you are but THANK YOU.”

Share this post: