A JERSEY student has braved the shave to raise money for charity in memory of her older brother, who died at just 19 weeks old from a rare and incurable skin condition.
Michaela Taylor – better known as “Mixi” – had a buzzcut over the weekend in aid of national research charity DEBRA, which supports individuals and families affected by the incurable skin condition, epidermolysis bullosa or EB.
EB, also known as butterfly skin, is an extremely rare and painful genetic condition which causes the skin to blister and tear with the slightest touch, resulting in the need for multiple bandages to be applied every day.
The charity is particularly close to the heart of the former JCG deputy head girl, who is currently in her first year of chemistry at Cardiff University, as her older brother, Charlie, died from EB.
Mixi explained that Charlie suffered from Junctional EB, one of four types of the condition which are each caused by a separate genetic mutation.
The condition was confirmed not long after he was born, by doctors who travelled over from Great Ormond Street Hospital.
“My mum said they could tell something wasn’t quite right as soon as Charlie was born,” Mixi said.
“It was very tough on her, because it’s so tiring having to look after a baby all day when it is in a lot of pain and doesn’t really know what’s going on.”
“[EB] is pretty severe – people don’t really survive,” she added.
Though it is thought to affect around half-a-million people worldwide, there is no cure for EB and much of what is already known about the condition is a result of the research that DEBRA does.
It is one of the reasons Mixi says she “always” fundraises for the charity, which she describes as “very special” to her.
The latest of her fundraising endeavours came over the weekend when, with the help and hair-trimming tools of her flatmates, Mixi swapped her shoulder-length hair for a buzzcut.
The money raised by her efforts will go towards supporting people living with the disease. As well as research to find a cure, DEBRA also provides funding for treatment and family support.
Mixi said: “The main thing is giving money to the families of people who are affected with it, because it’s such a debilitating disease.”
So far, she has raised over £2,000 for the charity, but is still able to collect donations via her justgiving page.
