Click here for a signed version of the above video.
The ‘Help Rose Bloom’ campaign
We are a group of family, friends and local community members fundraising on behalf of Rose O’Flaherty. This is Rose’s plight in her own words: “Mommy, when will I be able to hold your hand to walk to school?” Rose, who lives in Ballydwyer, Ballymacelligott, County Kerry, is only 4 years old and was diagnosed with a rare and serious genetic neuromuscular condition called Spinal Muscular Atrophy (SMA), Type 1, when she was 9 months old. SMA 1 children typically have a life expectancy of 2 years. Currently, there is no cure for SMA. However, there are treatments available to help manage symptoms and reduce discomfort.
Rose is a gorgeous, 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 4 recently, she said “Mommy, I don’t want to be 4, I want to he a baby forever because I can’t walk”. This is Rose’s very sad reality, but highly indicative of the level of awareness that Rose already has in her brilliant and clever mind.
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 as detailed in Rose’s Story, but we need your support. We would be very grateful if you could take the time to read Rose’s story and consider how you can lend your support to her campaign.