Simon Whittle
Dave and Simon run the Dam
Fundraising for Cystinosis Foundation UK
Story
Thanks for visiting our page - we're running the Marathon for the Cystinosis UK Foundation.
Our 12 year old friend Grace Atkins suffers from Cystinosis, a rare genetic disorder that can lead to kidney problems, blindness, major organ failure and impaired growth. It is astounding that with all her problems she is unfailingly sparkling and cheerful. She is the most amazing person we know.
In the past it would be rare for a sufferer of Cystinosis to survive into adulthood. Modern medicine has made this possible for Grace and thousands of others but there are dramatic side effects and because Cystinosis is so rare it has been difficult to fund the research necessary to allow sufferers to enjoy the lives they deserve. I urge you to read the extract below from a frank and modest letter that Grace sent out to the children in her class who didn’t understand her condition. Typically she has chosen to leave out the worst bits.
Many thanks for taking the time to read this, and please dig deep.
Si and Dave (not the Hairy Bikers).
Dear Classmates,
I have asked my Mum and Dad to help me write this letter to you because some of you are asking me questions about the condition I have. I think it might be easier to answer your questions all in one go.
When I was 1 year old I got very sick and stopped growing. The doctors found out that I have Cystinosis which is very rare. The good news is as long as I take all my medicines I can be just like everyone else!
What this means:
- I need to drink a lot of water every day (3-4 litres!).
- I need to go to the loo more often than you.
- I need lots of medicine during the day and night (17 xs per day).
- I have a small tube in my tummy. I can’t eat enough to stay healthy, so at night when I’m sleeping I get special milk through my tube. This doesn’t hurt at all. I can also have some of my medicines through my tube, which is great because they taste HORRID!!
- I feel tired most of the time. I often feel sick.
- The medicines are very strong and sometimes you can smell them on my breath.
- I need to wear sunglasses a lot of the time because bright lights and sun hurt my eyes.
- My teeth are a little bit yellower than yours because of all the medicines I take.
- Mum has a blue badge in our car so I don’t have to walk too far when I’m feeling very sick or tired.