In 2000 my auntie's world was blown apart. She had 2 boys (my cousins) Danny was born in 1990 & Billy in 1993. Both boys were absolutely perfect & both were born healthy.
However in early 2000 Billy was admitted into the local hospital & was diagnosed with a virus. After 3 days he was discharged. But my auntie Kim knew something wasn't right. Billy started walking on tiptoes & slurring his words. Kim took him to the GP who referred him back to the local hospital & they referred him to GOSH (Great Ormond St Hospital) & that's when her world was turned upside down. In May 2000 at just 6 years old Billy was born with a genetic life threatening condition called Adrenoleukodystrophy or ALD. Because Billy had it GOSH tested Danny & a month later he too was diagnosed with ALD.
Billy went downhill rapidly & sadly died in January 2001 just 8 months after being diagnosed. Danny however is totally different. He is registered blind & has mild learning difficulties. & although he has just celebrated his 30th birthday he looks a lot younger !!
My auntie Kim searched for someone to talk to about ALD but as it was so rare she couldn't find anyone.
Then 1 day she was reading a magazine & came across an article about a lady who just like her had 2 sons with ALD. She couldn't find any support anywhere either so decided she'd set up a charity. So in 2004 ALDLIFE was created. Initially the charity was set up to provide emotional & financial support to patients & families, to raise awareness about the condition & raise funds for scientific projects to find new treatment or a cure. On the 15th May 2019 the charity was relaunched as Alex (after Sara's eldest son who died from ALD) in 2012. It now helps other types of leukodysrophies though Adrenoleukodystrophy is still the main one. Alex has no government funding & relies on people raising funds to help them.
So I've decided in memory of my little cousin Billy to do the London to Brighton Cycle Ride on Sunday September 13th.
So I've set up this Just Giving so that you lovely people out there can sponsor me.. can be pennies or pounds..... as the saying goes every little helps.

Alex TLC is a trusted and experienced organisation offering support and information for all those affected by a genetic leukodystrophy. Formerly ALD Life, an internationally recognised centre of excellence for people affected by adrenoleukodystrophy and adrenomyeloneuropathy, the charity was established in 2004.Due to popular demand, we extended our services to support all leukodystrophies in 2019 and became Alex, The Leukodystrophy Charity. Your donations make our work possible.