Today I’m massively tired and unable to think, so here’s a message from Mother dearest for your perusal.
After a year of intensive medical testing, my littlest niece has been diagnosed with a variant of the appalling condition Ataxia Trelangiectasia (AT). This is so rare that she is only the 9th person in the UK to be diagnosed, and so the specialists can’t predict how the condition will progress in her case. Sufferers of classic AT don’t usually live past age 10 or so because their compromised immune systems lead to chronic chest infections, leukemia (blood cancer) and lymphoma (cell cancer), but our one positive thing is that so far Lilly’s immune system isn’t destroyed so she may live into early adulthood. She is already losing control of her balance, her head movements and her focus, and her speech is starting to slur too. Given her decline since she started school in Sept, a wheelchair is likely very soon and she will have a full time occupational therapist with her at school from next new year. By the end of junior school, she will have lost all motor control so won’t be able to write or feed herself, and her bladder & bowel control will have gone too. The only thing that won’t go is her bright little mind.
The reason I am telling you this is that Lilly’s Dad, my little brother Joe, is running in the Brighton Marathon next April to raise money for Ataxia UK, the Society which is working to find a cure for AT. Please have a look at his web page and support him, if you feel that you can.
You can help Joe Day raise money for this great cause by donating directly to their fundraising page – http://www.justgiving.com/Joe-Day1.
JustGiving sends your donation straight to Ataxia UK and automatically reclaims Gift Aid if you are a UK taxpayer, so your donation is worth even more.
Thank you for your support!