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£6,562.48
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William Newman avatar
William Newman

Ellie in my head

keeping 'Ellie' in my head for Cystinosis Foundation UK because I want to help raise awareness and fund a cure

82 %
£6,562.48
raised of £8,000 target
by 174 supporters
Donate

Cystinosis Foundation UK

TO PROVIDE SUPPORT TO ANYONE DIAGNOSED WITH CYSTINOSIS, AS WELL AS THEIR FAMILIES AND FRIENDS. TO HIGHLIGHT THE DISORDER TO MEMBERS, THE MEDICAL PROFESSION AND THE WIDER COMMUNITY. TO ASSIST IN THE PROMOTION OF RESEARCH INTO THE TREATMENT OF CYSTINOSIS. TO WORK ALONGSIDE OTHER SIMILAR ORGANISATIONS IN UNDERSTANDING MORE ABOUT METABOLIC DISORDERS IN GENERAL

Charity Registration No. 1074885

Story

Thanks for taking the time to visit my JustGiving page.

When I heard in August 2016 that my granddaughter Ellie (13 months) had been diagnosed with Cystinosis I didn’t know what it meant.  Frantic searches on the internet looking for hopeful messages and information brought out the truth.  She is one in a million (the odds of both parents carrying cystinosis gene). I couldn’t get Ellie out of my head thinking about what she (and her mum & dad and twin sister Molly) had to come.

Cystinosis is a very rare genetic disease that affects approximately 150 people in the UK and about 2000 people worldwide. It causes the amino acid ‘cystine’ to accumulate in the body’s cells. Over time this destroys various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system. Very few people have heard of Cystinosis, including many medical professionals.

Because Cystinosis is so rare and affects such a small population,
research money is scarce to nonexistent.   Currently there is no cure, just a lifetime of treatment to try to prevent the condition from getting worse.   In the past it was rare for people with Cystinosis to survive into adulthood but thanks to charities such as Cystinosis Foundation UK there is real hope. The organisation funds research into the condition, provides support and advice for patients and families, and raises awareness of Cystinosis among the medical community.

So what can I do as a grandparent? Try and get as many people to
understand what Cystinosis is and to help raise funds for research towards a cure for Ellie and all those living with the condition. 

On the 9th of December 2016 I had Ellie’s name shaved into my head as an outward sign of how much she is in my head everyday.  I was hoping to raise £450.  That's £3 for each person with Cystinosis in the UK. People have been, and continue to be, so generous that my original target has been smashed. Research is so expensive and takes years so this feels like a drop in the ocean.  

Ellie is the best advocate for people living with a rare condition– she’s now 3 and a half years old but already has such a cheery, positive attitude to life. 

If you could give £3 that would be great; even £1 would be appreciated. When you get to the donation page just change the 'other amount' to whatever you can give and click outside the box to confirm your choice.

"We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop"      Mother Teresa

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