Weʼre raising £350 to help raise funds and awareness for danielle who suffers from Retts syndrome and for my donor and her family who also suffered from Retts xxx
- Newcastle, UK
- 7 days to go
The page owner is responsible for the distribution of funds raised.
Ste , steven and Andy pee are running the GNR this year for Retts syndrome, Freeman lung and heart transplant association and the CF Trust.
Rettsyndrome is a rare neurological brain disorder effecting mainly females 1 in every 12000 girls born ,some children are affected more than others,physically & mentally, most girls loose the ability to walk, talk & use their hands,they can develop lots of health problems. We are raising awareness & funds for Rettsyndrome in honour of Danielle & all girls diagnosed with Retts . Danielle was diagnosed with Retts at 2yrs old in 1995 she was given a lifespan of 10 yrs ( she is now 24 yrs old ) lots of girls sadly don't get to reach this age . Over the years through research ReverseRett have reversed the condition in the lab,clinical trials have begun , whilst a cure is imminent this may not happen in Danielle's life time ,there is Hope for a speedy cure for all our girls Diagnosed with Rettsyndrome.
Retts is only a small charity and doesnt do places for the GNR so we have decided to raise some money for Danielle so she can maybe go on a lil holiday or something. As her life is so precious and we never know whats around the corner so she will continue to make lovely precious memories with her family.
We are also running for Retts as I've jist had a lung transplant November last year and i found out my donor was also suffering for Retts syndrome so this is another special reason they are running for in honour of my donor and her family.
please donate as little or big as possible and share our page. Thank you xxx
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Vicki Clayton started crowdfunding