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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 private children’s assessment clinic confirmed for Killarney town centre

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The consultant psychiatrist who blew the whistle on the South Kerry CAMHS scandal, Dr Maya Sharma, is officially opening a new private children’s assessment clinic in Killarney town centre.


The development follows reports in the Killarney Advertiser in May that Dr Sharma was seeking a return to Kerry.

The clinic is now confirmed to open within the next two months after suitable town centre premises were successfully secured.

The facility will provide a range of specialist assessment services for children, giving local families an alternative option within the county to bypass long public waiting lists.


Dr Sharma previously exposed the over-medication and inappropriate treatment of young patients within the South Kerry Child and Adolescent Mental Health Services.

Her disclosures led to a major state investigation which revealed hundreds of vulnerable children had been harmed or put at risk by unsafe clinical practices.


Councillor Martin Grady, who assisted in finding the town centre location, welcomed the finalisation of the plans and praised Dr Sharma’s bravery and dedication.


“I am absolutely delighted that we were able to work together to secure suitable premises for Dr Sharma here in Killarney,” Cllr Grady said. “She is a tremendous asset to our town and to County Kerry. The work she has carried out over the years has made a real difference to so many children and families. Personally, I want to sincerely thank Dr Sharma for her bravery and honesty in coming forward and speaking the truth for the betterment and protection of vulnerable young people receiving treatment. Her actions required immense courage, and many families throughout Kerry and beyond recognise the importance of what she did.”


Cllr Grady noted that Dr Sharma has a strong personal connection to the area, particularly her love for the local National Park, and is eager to begin practicing in Killarney again.


“There are massive waiting times for children requiring assessments through the public system,” Cllr Grady added. “While this private clinic won’t replace public services, it will provide families with another option and will greatly increase local capacity. We are fortunate to have someone of Dr Sharma’s calibre choosing to establish her practice here.”

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St Mary’s Church hosts John McCormack tribute


A musical recital celebrating the legacy of Irish tenor John McCormack took place at St Mary’s Church of Ireland on Friday last, July 3.


The event featured Kerry tenor Gavan Ring, who was joined on stage by pianist Gary Beecher and violinist Kenneth Rice.


The trio performed a programme of songs, operatic pieces, and transatlantic melodies associated with McCormack’s international career and his influence on Irish-American identity.
A key element of the performance included a dedicated tribute to the historic musical partnership between McCormack and violin virtuoso Fritz Kreisler.


The concert was held as part of the new ‘Summer in Killarney’ festival, a cultural series marking 250 years of Irish contributions to American culture.

The festival is presented by the Killarney Chamber of Tourism and Commerce, with support from the NPWS, Heineken 0.0, Fáilte Ireland, and Kerry County Council’s Community Support Fund.

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