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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