My name is Kate Reeves-I am 32 and live with my 8 yr old son Louis in SW France.
Louis has Friedrichs Ataxia and was diagnosed at 5 yrs old.
FA is a rare recessive degenerative disease and affects the whole body.It is, at present a life-shortening and incurable disease.
Patients are usually confined to a wheelchair by their teens . Symptoms include fatigigue, cramps, , diabetes, loss of reflexes,vision,hearing , swallowing and Cardiomyopathy (enlargement of the heart walls/heart).
However FA affects each patient differently (genetics!).
Louis lost his reflexes at 5 and has Cardiomyopathy (one of the mre serious aspects that affect some with FA).
At present Louis can still walk but has no reflexes and uses the wall/people/bars to get about.
Louis attends school but has a scribe .He receives special physio sessions 3 times a week.
Louis takes 9 chemical anti-oxidants a day and has lots of regular hospital check ups in Limoges and Paris (Necker Hospital).
Louis is a gorgeous intelligent and brave child with a lust for life.He has a wonderful sense of humour and loves swimming,ping-pong,nintendo,animals and films:)
It is hard being a Mum and feeling so powerless to help your child-Fundraising and living each day as best we can helps.
In 2002 I swam 22 miles for Apec . I had been extremely ill after louis delivery (at 32 weeks) and nearly lost my life and wanted to help research into the condition.
This December I managed it again...it took just over 8 hours and despite having been pretty ill the week before I managed it in a pool in Guilford.The staff were great and helped me counts laps and fill up on cake and hot chocolate after (I was extremely hungry).I broke it down so that I managed 16miles then 6 the following morning starting at 6.30am each day .I was exhaisted for four days following the event but it was definately worth it! Ataxia UK is a wonderful charity and i hope to help support them and offer a substantial fundraising total.
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