Story

Megan is 14 and she is my daughter, she was diagnosed with Friedrech’s Ataxia only 9 months ago and is already dependant on a wheelchair. She has now been told that it seems to be far more aggressive than has been suggested and will need fully aided living and fully automated wheelchair within the next year.

She is an amazing little girl and I am so proud of her…. Not only is she 14 and going through everything that a teenager goes through but she has to deal with this. She has arranged and run a couple of Tea Party fundraisers to help afford what she needs and although new symptoms seem to be popping up monthly she stays positive and focus on being normal young lady.

I cant just do nothing, I cant stop thinking that I did this and now I cant help BUT what I can do is raise awareness, raise the profile of FA and try to get some clinical tests, or get meg out to the states where there is an awesome group called FARA who specialise in this and I must ensure we have the money to help Ataxia UK and help meg get what she needs to get around and continue to grow as a young lady with her life ahead of her
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FA is a rare inherited disease that causes nervous system damage and movement problems. It usually begins in childhood and leads to impaired muscle coordination (ataxia) that only worsens over time. Although rare, FA is the most common form of hereditary ataxia, affecting about 1 in every 150,000 people The first symptom to appear is usually difficulty walking. Generally over 10 or 20 years the ataxia will gradually worsen and will slowly spread to the arms and the trunk. Other features include loss of tendon reflexes, especially in the knees and ankles which will disable the ability to walk over time. Slowness and slurring of speech develops and will get progressively worse. Many individuals with later stages of FA develop hearing and vision loss and heart issues and in later stages of the disease individuals may become completely incapac