A community in Tralee, County Kerry, has come together to launch a fundraising campaign in aid of a 4-year-old girl who was born with an incurable neuromuscular condition.
Rose O'Flaherty, from Ballymacelligot in Tralee, was diagnosed with Type 1 Spinal Muscular Atrophy (SMA1) - a severe genetic condition that weakens muscles and causes problems with movement - when she was just nine months old.
SMA1 children typically have a life expectancy of just two years, but Rose has been defying medical odds ever since her diagnosis. She has already learned to stand with aid for up to 15 seconds thanks to extensive physiotherapy.
Her parents Karen and Thomas hope that one day she will be able to walk with aid and also hope that she will be able to perform simple tasks that other people take for granted, such as moving from a lying to a sitting position.
There is no cure for SMA1, but certain treatments can help manage the symptoms and reduce discomfort.
Rose currently receives Spinraza via lumbar puncture to stem the progression of SMA1 and she will need to receive the treatment every four months to ensure that it protects against the condition. She will also need to attend personally funded physiotherapy for the rest of her life to ensure that she remains as strong as possible.
Rose will additionally undergo high-risk spinal surgery during the summer to treat a significant curvature on her spine caused by scoliosis.
The cost of Rose's treatment is substantial, prompting friends, family, and members of the local community to launch a fundraiser on GoFundMe to help offer financial support.
The "Help Rose Bloom" campaign has raised €22,000 of its €250,000 and will go toward securing equipment, facilities, and treatments that Rose will need for the rest of her life.
Karen and Thomas hope that the campaign will help fund a wheelchair-accessible ground-floor extension, an ergonomic car seat, and a wheelchair-accessible vehicle. They also hope that the fundraiser can help meet the significant costs of private physiotherapy, which are estimated to be around €10,000 per year.
Rose, who is now at the age when children begin going to school in Ireland, has recently been asking difficult questions of her parents.
"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, who is highly alert and very bright.
For more information, visit the Help Rose Bloom website here.
Comments