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Back in January 2020, our family (Kieran, Mum, Nan and Grandad) signed up for the Superhero Series Tri, consisting of a 150 m swim in open water, 3 km Bike and 1 km push/run/wheel at Dorney Lake, Windsor on 15th August 2020. Kieran is the Superhero and we are his sidekicks! Our aim was to raise funds for Ataxia UK. Unfortunately, due to the Coronavirus, this event has been cancelled.

His training for the Superhero Series Tri was going swimmingly! Kieran was swimming with his amazing teacher, Jayne at Uttoxeter Leisure Centre, gaining his 300 m swimming badge in February. Gymnastics training with Pauline and Linda at Uttoxeter Gymnastics (trying to add to his collection of a bronze, two silvers and a gold gym medals). Horse-riding at Scropton RDA to improve his core muscles and also getting ready to start the new cricket season at Checkley Cricket Club. Kieran is also an honorary member of Uttoxeter 1st Cubs. Exercise and movement is imperative for Kieran’s mobility, trying to keeps his body as fit and strong as it can be, fighting to keep him walking.

Kieran has a rare neuromuscular condition called Friedreich’s Ataxia(FA), which affects his balance, coordination and contributes to poor muscle strength. Kieran also has Hypertrophic Cardiomyopathy and his feet are starting to turn inwards, making walking much harder. His body is in a constant state of fatigue, deprived of energy, all day, every day as his body limits the production of a protein called frataxin, which is known to be an important protein that helps the mitochondria (energy producing factories) in a cell.  Luckily, it does not affect Kieran's mental capabilities at all, especially in maths! At present there is NO TREATMENTS and NO CURE for this debilitating degenerative disease. The NHS have been amazing but because of the rareness of FA, it took UHNM in Stoke, two and a half years to find his actual diagnosis. That day came in September 2017. The NHS are incredible and Kieran regularly sees over 16 different departments over 4 hospitals, all of which contribute in various ways to Kieran’s ongoing care. From a fabulous physiotherapist, occupational therapist, paediatricians, several cardiologists, orthopaedic surgeon, orthotics, audiology, specialist neurologists to name but a few. However, in the beginning, the clinicians that we met had never treated anyone with Friedreich’s Ataxia! This is where Ataxia UK comes in. They are a very small charity providing valuable support and services to all Ataxians and their families. Ataxia UK also provide NHS doctors, nurses, physiotherapists and occupational therapists with clinical guidelines on how to manage their patients as well as providing CPD training courses. Ataxia UK organises conferences for Ataxia families, supporting us with anything we need and most importantly connecting us to links all around the world with other organisations such as FARA (Friedreich’s Ataxia Research Alliance in the USA) helping with research to provide any medicines to help treat FA and ultimately a CURE. 

Since being a home in lockdown, Kieran’s mobility has declined. The amount of trips and falls within the home has increased, some of which have quite shocked Kieran. The first 4 weeks, we started out by just doing his physiotherapy and stretches but soon realised this was not enough especially after all the physical activities he was doing before lockdown. So, after guidance from his consultant we were able to get Kieran out on his recumbent trike, around the quiet country lanes behind our house at a very early but extremely quiet time of day. Being a single mum, in lockdown has meant that I'm on alert 24/7, which is really exhausting and this time outside, walking besides Kieran is literally like a breath of fresh air and helps with my mental well-being. 

So far, since the 13th April, Kieran has cycled approx 2.85 km, most days (with a few rest days in between!)  to date he has cycled 65 km. Considering Kieran can’t walk 100 m, unaided, this is a super achievement and I am incredibly proud of him. 

Between 15th June and 15th July 2020, Kieran plans take part in the ‘at home Superheros’ challenge by cycling around our house, 2.5 km every day (with the occasional rest day!)  Kieran aims to cycle 70km during this time. 

We understand finances are tight for everyone at the present time but any contribution to Ataxia UK will be very gratefully received. 

Thank you

Kieran (Superhero) and mum Leeann (sidekick)

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