Connect with us

News

Friends rally for baby with rare condition

Published

on

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.”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Advertisement

News

Dr Crokes stalwarts enjoy lake cruise

Published

on

By

Dr Crokes stalwarts enjoy lake cruise

Dr Crokes stalwarts enjoy lake cruise

Dr Crokes GAA Club hosted a special day out for its senior members on Monday, this week, taking a group aged between 70 and 90 on a cruise across the Lakes of Killarney.

Organised by the Dr Crokes Healthy Club committee under its Crokes Cruisers initiative, the event was held to recognise the lifetime contribution made by long-standing members who continue to support club activities behind the scenes.
The group travelled on two vessels, including An Cathal, an open boat operated by local brothers Tony and Mike Fleming. Built to preserve the traditional Killarney lake boat style, it is the only purpose-built, fully accessible boat on the lakes, allowing members with mobility issues and wheelchair users to safely join the two-hour trip.
Following the lake tour, the party gathered on shore for coffee and refreshments provided by Derric McMahon and Harry Clifton of the Ross Castle Garden Cafe.
The initiative forms part of the club’s ongoing community work as a Gold Award winner in the GAA Healthy Club programme.

Attachments

Continue Reading

News

Green light for Torc to Dinis walkway

Published

on

By

Green light for Torc Dinis walkway

Planning approval has been granted for a long-awaited lakeside walkway and cycleway connecting Torc and Dinis inside Killarney National Park.

An Coimisiún Pleanála confirmed permission for the elevated platform project, which will complete the popular scenic loop while removing a dangerous 800-metre section along the busy N71 Killarney to Kenmare road.
Walkers and cyclists currently have to navigate narrow bends alongside heavy vehicular traffic and tour buses to complete the circuit between the Dinis and Torc car parks.
Mayor of Killarney John O’Donoghue welcomed the decision, calling it a transformative development for the region: “Since beginning in the Council in 2021, this has been one of my priorities as an issue I inherited from my predecessor Michael Gleeson, he being the first person to initially pursue the idea. I have repeatedly kept it on the agenda at Council meetings and now delighted to see we finally have positive news as this decision, which has been long overdue and eagerly awaited, will prove transformative for the area.”
Mayor O’Donoghue added: “The path, which will be on the lakeside, will offer views to rival those anywhere in the world and I have no doubt will prove very popular with locals and visitors alike. Huge credit is due to Kerry County Council and the NPWS for their co-operation on the issue. Once the decision has passed through its statutory waiting period, the design and tender stage can begin.”
The project, which will be built on a raised platform to protect the natural habitat beneath, will also be fully accessible for people with mobility issues. Killarney Chamber of Tourism and Commerce also welcomed the green light, noting that the completed loop will create a major safe attraction showcasing Muckross Lake, Dinis Cottage, and the Old Weir Bridge.
LAKESIDE PATH: An Coimisiún Pleanála has approved planning permission for a new raised walkway and cycleway connecting Torc and Dinis in Killarney National Park.

Continue Reading

Last News

Sport