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Friends rally for baby with rare condition

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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.”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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New Streetscapes murals launched at College Square

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A colourful collaboration between the Kerry Local Creative Youth Partnership (LCYP) and the Architecture Kerry Festival at Kerry County Council launched yesterday evening at College Square.

Titled Streetscapes, the open-air public art installation officially opened at 5pm on Thursday, accompanied by a performance from the Killarney Youth Drumming Band THUMP! under the guidance of Urs Wenk from Drum Dance Ireland.


The public art project features a series of wall murals depicting Killarney through the eyes of local children, exploring freedom, play, and potential future evolutions of the townscape.

The artworks reimagine Killarney’s iconic landmarks and streets, blending youthful imagination and curiosity.


Supported under the Creative Ireland Programme, the installation is mounted on the gable wall of Reen’s Life Pharmacy in College Square, where it will remain on public display until March 2027.


Speaking at the launch, Daniel O’Shea, Youth Development Officer at Kerry ETB, stated: “Streetscapes is a wonderful celebration of how children see things. Their creativity brings new perspectives to the townscape, and we are proud to support their ideas and their art through this public artwork.”


Deirdre Enright, Co-Ordinator of the Local Creative Youth Partnership at Kerry ETB, acknowledged the community support behind the initiative: “We are very grateful to Reen’s Life Pharmacy who have shared their built space with us. Huge credit is due to the artistic team from Me+The Moon whose dedication to creativity and to children’s art shine through in this work.”


The project forms part of the annual Architecture Kerry Festival and receives funding through Creative Ireland and the Department of Education and Youth via Kerry ETB and Kerry County Council.


Victoria McCarthy, Festival Organiser and Architectural Conservation Officer at Kerry County Council, welcomed the continued inter-agency project: “It’s always a great event for Architecture Kerry and we are so pleased with this collaboration between public sector organisations. It remains a key feature of the Architecture Kerry programme.”
See next week’s Killarney Advertiser for full photographic coverage of the event.

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Dr Crokes stalwarts enjoy lake cruise

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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.

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