georgia hughes

Help Cure 4H leukodystrophy

Fundraising for Yaya Foundation For 4H Leukodystrophy
raised of £5,000 target
by 150 supporters
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Last year my beautiful son was diagnosed with 4H  Leukodystrophy, POLR3B type. (The 4 gene changes are either in POLR3A POLR3B POLR1C or POLR3K) 4H leukodystrophy is an extremely rare degenerative brain disease. If it wasn’t for the Yaya foundation I wouldn’t of had the opportunity to speak to one of the founders of this disease, Dr Nicole Wolf, in amsterdam. She reviewed his MRI scans and confirmed this disease, and i then received a call from his geneticist confirming which mutation he had.

This disease has so sadly robbed him of the ability to stand walk or talk and eventually will completely rob him of all movement as it progresses 

 Please consider donating, all proceeds will go to the Yaya Foundation who are tirelessly non stop working hard to find a cure for this heartbreaking disease. 4H shortens your life span considerably and has devastating long term affects. As well as wanting to raise as much awareness as I can I inevitably hope for a cure, for all our children. 

Thank you for reading.

 Much love. 


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