Andy's story
On Tuesday 16th August our world was turned upside down when we found out that our beautiful little daughter Ellie has a very rare genetic disease called Cystinosis, only 150 cases in the UK and 2000 worldwide.
Cystinosis means that every cell in Ellie's body retains and accumulates an amino acid called cystine which, if untreated , would build up into crystals and cause irreparable damage to all her vital organs starting with the kidneys.
The treatment currently involves administering twelve liquid medications, round the clock, through the day and night, with eye drops starting soon to be administered on every waking hour.
As Ellie's dad, I want to do something to help, so with my two friends Stephen McVeigh and Emma Wright we will be doing the Isle of Wight ultimate challenge over the May Day Bank Holiday weekend which involves walking the coastal path (60 Miles) in two days.
Please support us and help us raise as much money as possible to help with Ellie's future and the future of all the families affected by this horrible disease 

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