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Little Rose O’Flaherty with mom Karen, sister Kate and dad Thomas at the launch of the fundraising campaign at the Rose Hotel on Friday. Also pictured is campaign co-ordinator Catherine Baily, Kerry Rose Sally Ann Leahy, Cathaoirleach of Kerry County Council Patrick Connor Scarteen and campaign co-ordinator Conor Ellard. Photo by Dermot Crean
A FUNDRAISING campaign has been launched to help a courageous young girl from Ballymacelligott who needs treatment to cope with a rare genetic condition.
Family, friends and local community members have come together to help four year old Rose O’Flaherty who was diagnosed with a rare and serious genetic neuromuscular condition called Spinal Muscular Atrophy (SMA), Type 1, when she was nine months old.
The ‘Help Rose Bloom’ campaign was officially launched at The Rose Hotel on Friday with the help of Kerry Rose Sally Ann Leahy and Cathaoirleach of Kerry County Council, Patrick Connor Scarteen.
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SMA 1 children typically have a life expectancy of two years. Currently, there is no cure for SMA. However, there are treatments available to help manage symptoms, reduce discomfort, and maintain quality of life for as long as possible.
Watch the video below…
Rose, the daughter of Karen and Thomas O’Flaherty, is a determined girl who is defying medical odds. She has already learned to stand with aid for 10-15 seconds thanks to intensive ongoing physiotherapy.
However, extremely difficult and heart-breaking questions such as “Mommy, when will I be able to hold your hand to walk to school?” and “Mommy, why can’t I play like the other kids?” are now common questions for Rose.
After turning four recently, she said “Mommy, I don’t want to be four, I want to be a baby forever because I can’t walk”.
Her parents dream that one day Rose will walk (aided) and be able to do the simple things that we take for granted like, being able to move from a lying to a sitting position.
There is a treatment plan for Rose involving intensive therapies, many surgeries and specialist equipment but financial support is crucial.
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It has and will continue to be a long and expensive process to provide all the treatments necessary to allow Rose the best standard of living that can be achieved under the circumstances.
Karen and Thomas have been managing with these therapies to date, however, they are simply unable to personally finance the vast array of expenditure required for the immediate future.
Organisers of the ‘Help Rose Bloom’ campaign have created a GoFundMe page to help raise funds for Rose and her family and hope to raise €250,000 through the campaign. They are also organising some novel fundraising events during the month of July.
Anyone interested in finding out more or supporting the campaign can do so at:
www.gofundme.com/helprosebloom
You can check out the social media channels www.facebook.com/helprosebloom, www.instagram.com/helprosebloom and www.twitter.com/helprosebloom
