Grace and her twin sister Emily are 9 years old. Both developed normally until the age of 5 when Grace was diagnosed with a fatal life limiting illness called Niemann Pick Type C. Grace's elder brother, Harry, died from NPC aged just 7 in September 2010.
Niemann Pick Type C, is an inherited metabolic storage disorder. A neurologically degenerative disease. Children are born normally and develop normally until cholestorel and lipids starts to accumulate in the brain cells and destroy them. This causes damage and loss of neurological function.
NP-C is always fatal. The vast majority of children die before age 20 (and many die before the age of 10). At present there is no cure fo NP-C.
There is some hope for children with NP-C. Cyclodextrin has been approved and is in Phase 1 trial in the USA. We hope that 2014 will provide more hope for Grace and our children in the UK to access therapies that could be life saving.
To raise awareness of this devasting disease we are drumming for Grace across the Yorkshire region from Monday 14th April until Saturday 19th April. Please check out Grace's Website www.graceswish.co.uk for updates and please join us and donate where you can. Thank you for your support xxxx
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