SUPPORT: Friends Shauna Clifford, Lucy Knight, Feral Ashworth and Mark Davy are planning a fundraiser tomorrow (Saturday) to raise funds for baby Marley May who was diagnosed with a rare condition. Photo: Michelle Crean

By Michelle Crean

Friends of one Killorglin family devastated to learn their child has a rare and possibly non-curable disease are planning a big fundraiser to get the little girl to America.

One-year-old Marley May was diagnosed with Leigh’s Disease, a rare mitochondrial illness, in November and faces a life expectancy of just three years.

Feral Ashworth, who has been a close family friend for 20 years, has set up ‘The Mitten fund’ and a GoFundMe page: ‘help marley may’ with a target of €50,000.

[caption id="attachment_29896" align="alignleft" width="576"] RARE CONDITION: Little one-year-old Marley May from Killorglin who has been diagnosed with a rare condition called Leigh's Disease.[/caption]

Following a tractor fundraiser last weekend, Feral with the help of friends and family has organised a shave and wax event in The Fishery, Killorglin, tomorrow (Saturday) at 1pm.

There, Feral and her sister Fern will shave their hair off, while Mark Davy and David Roche will have a leg wax and head shave. Donations will be accepted on the day and there’s also lots of raffle prizes up for grabs.

Marley May, who has two older brothers, was born a happy healthy little girl and continued to be that way until things changed dramatically overnight, Feral explained to the Killarney Advertiser.

“In November, Marley May’s parents received the devastating news that she is suffering from a rare mitochondrial disease which has no known cure,” she said.

She added that there’s only been one other case in Ireland, a little boy aged two, who sadly passed away.

“It’s a very rare condition which a lot of people don’t know about. We’re trying to raise funds as the trial tests are in America."

Treatments generally involve variations of vitamin and supplement therapies, often in a “cocktail” combination, and are only partially effective - if at all.

The only hope the family has is a trial drug called EPI-743  EPI-743 that is based on vitamin E. Treatment is a gruelling 13 months and is only being trialled in America.

She added that it’s going to be a long road to try to get a trial here in Ireland, if at all, to prolong Marley May’s life expectancy.

“I’m very close to the family, they have watched me grow up,” Feral said.

“I want to do anything I possibly can to watch their kids grow up together. My hair will grow back, there’s no guarantee they’ll have the time with Marley May.”