Gustav Holst Stuge

Gustav's page

Fundraising for RETT UK
raised of £10,000 target
by 35 supporters
In memory of Skye Wellesley

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RCN 1137820
We change lives and give a brighter future to those affected by Rett syndrome. Now.


In June 2008 Skye, aged one, was diagnosed with Rett Syndrome.

 Rett Syndrome is caused by a sporadic genetic mutation on the MECP2 gene located on the X chromosome. This microscopic change in the structure of chromosomal proteins has an overwhelming impact on the life of the 1 girl in 15,000 statistically around the world. Most obviously, Rett chronically slows these girls neuro-development, very few Rett girls will ever speak and only half of them will walk. Behind the physical incapacity, there are also additional problems as Rett girls are prone to scoliosis, difficulties with digestion, epilepsy and fits of extreme anxiety.

There has been very significant progress towards that goal over the last four years and I'm pleased to say that Professor Adrian Bird at Edinburgh University is at the forefront. Research can be very focused as the gene, MEPC2, that causes Rett was pinpointed ten years ago. Finding a cure for Rett would bring so much happiness to many girls who are prisoners within their own bodies, plus it will help to find a cure for other genetically related disorders.

Sadly Skye passed away on 12th of December 2021. She was 14 years old.

Thank you.

About the charity


Verified by JustGiving

RCN 1137820
Imagine being told your toddler you thought was healthy, but perhaps slow to progress, in fact had a rare and devastating disability that would leave them needing lifelong 24/7 care. Rett syndrome changes lives irrevocably. With your support Rett UK is there from the beginning. #ToKnowHerIsToLoveHer

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