A 16-year-old boy is urging fundraisers to dig deep into their pockets to help his beautiful niece battling a rare skin condition.

Jake Ward from Aylesbury, is running 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.

Jake's sister Sophie and her partner Nick have to witness their daughter suffering from the condition, where the slightest touch or knock can cause very painful sores.

This can happen anywhere over the body and in severe cases, blisters and sores can occur inside the body.

Ava was born with dominant dystrophic epidermolysis bullosa. 

Jake said: "And is now 15 months old. She is the happiest, smiliest and bravest little lady, despite dealing with her painful blisters or ouchies as she calls them.

"She is always up, running and bouncing around, full of energy and doesn’t let her condition hold her back. 

"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."

Jake works alongside his brother-in-law Jack at Route 93, where he is offering a free haircut in exchange for a donation to the DEBRA charity.

He said: "Jack my brother-in-law and also boss was keen to help as it’s his niece too and has kindly offered his free time and the use of his shop to help raise money alongside our colleague Luke.

"Between the three of us, we are hoping to reach a target of £500.

"We are happy to take any cash donations a jar will be in the shop or there is a GoFundMe page to donate even if you don’t want a haircut.

"Our barber shop is in Duck Farm Court Unit 27." 

Jake spoke about the impact Ava's condition has had on him as an uncle.

"Watching Ava miss out sometimes on playing with toys because her hands are too sore it’s dreadful for me, because as an uncle I believe my job is to give my nieces and nephews the time of their lives and dress up as Barbies or Spider-Man for their amusement," he said.

"Sometimes Ava forgets about her sores and blisters and giggles like mad until she catches it on a toy or the floor and it scares me because I don’t know how badly she has hurt herself or how bad the blisters will turn out.

“Ava-may is the bravest, happiest little girl I’ve seen in my life and will always make me smile. 

"Seeing Ava when I get back from college or work is the best part of my day, coming home to realise she’s come to see her uncle gives me the biggest smile.” 

Visit https://gofund.me/0de589cf to donate.