Aylesbury barbers raise over £1,000 for niece with butterfly skin

Jake Ward from Aylesbury, launched a fundraising event on October 29 in aid of Ava-may, a little girl who was born with Epidermolysis bullosa (EB), also known as butterfly skin.s

He was inspired to raise money for the charity Debra after witnessing how much Ava suffers from the skin condition,  where the slightest touch or knock can cause very painful sores.

Ava's condition, dominant dystrophic epidermolysis bullosa, can appear anywhere on the body and can blister inside the body in severe cases.

Jake told the Free Press at the time: "The charity DEBRA has supported us all as a family providing any equipment Ava needs to make her life a bit easier and providing information and pathways to the right help available.

"The charity also works tirelessly to research medications to relieve some of the pain caused by EB and maybe one day find a cure for this cruel disease.

"I wanted to do something to bring awareness to this condition and educate others in this rare genetic disorder while at the same time raising money for this charity."

As such, Jake and his fellow colleagues hosted a free hair cut day at Route 93, Aylesbury, setting out an initial target of raising £250. 

He said: "We have now finished the fundraising event and it was amazing!

"Our first goal was £250 and within a week of the go fund me going live we hit our target so I made the decision to up our target to £1,000 and then after the event on the 29th we met some lovely new clients and had such a great time.

"We managed to raise £1,205 as we speak, it keeps going up every single day and it’s amazing!"

Kind members of the public, friends and family have donated to the cause leaving messages of support.

Guy Thompson said: "Having met the parent of a child with EB and worked for a biotech that was trying to develop a treament for EB (unfortunately it failed) i know how nasty this rare disease is."

Katy Slade said: "A great cause, well done Jake."