One grandfather in the UK is took a nontraditional route to show his love and support for his granddaughter and her rare disease.
Some people run 5Ks, some people go door to door to fund raise, and some people join national organizations for the sake of raising money and advocating for awareness about a disease.
However, this grandfather had a different way of raising money and support for his granddaughter’s cystinosis.
As reported by the Buxton Advertiseer, in December of last year, Will Newman underwent a complete hair makeover and shaved his grandchild’s name – Ellie – into his head. Ellie has cystinosis.
Cystinosis is an extremely rare disease affecting as little as 150 people in the entire UK, where this creative granddad lives.
It is estimated that only about 2,000 people in the world are affected by cystinosis.
This rare disease causes amino acid to gather in a person’s cells, which leads to the gradual failure of a person’s organs. The most commonly affected organs are the:
- liver,
- muscles,
- kidneys,
- white blood cells,
- eyes,
- and central nervous system.
Newman explained that his motive for shaving his granddaughter’s name into his head is simple. He wants to show her he loves her.
While thoughts of his precious granddaughter have always been in his head, now his granddaughter will literally be placed in his head, or at least her name will!
Ellie has a twin, but her twin sister, fortunately, does not have cystinosis. At this time, because the disease is so rare and research is so limited, even doctors do not really know how to help Ellie. There are prescription drugs that can slow down the crystallization of her kidneys but these medicines do not completely stop the process.
Newman’s goal is to raise about $600 for the Cystinosis Foundation in the UK which would be about $3 for each person living with the disease in the UK. He has already raised over $1,200 at the time of the original article and over $4,000 to date. Read the article here!
If you want to see Newman’s big shave and his fundraising results…check out his page here.
What cystinosis fundraisers have you done? Share below!
To learn more about cystinosis, check out our partner, the Cystinosis Research Network.
