About the 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, from Ballymacelligot, Tralee, Co 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 be 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 (attached), 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.
Roses parents began to notice that she wasn’t meeting the milestones that their first child easily achieved at an early stage and began to worry. When they realised that she did not have the strength to hold her head or her upper body at a stage when most or all children would have been able to do so, when she struggled at weaning stage to take any solids and as she began to have recurrent chest infections by the age of 4 months, they began to further investigate why this was the case. Following comprehensive testing Rose was diagnosed at 9 months with SMA type 1. Rose began her treatment of Spinraza shortly afterwards. This diagnosis turned Roses, her parents and her family’s world upside down and in one sentence Rose’s future became very uncertain and a future that would depend on the support of her family, the medical profession and the community at large.
Rose currently receives Spinraza via a lumbar puncture, this treatment has put a stop to the progression of her SMA but cannot reverse the toll it’s taken on her little body. Rose will be in personally funded physiotherapy throughout her lifetime to ensure she remains as strong as she can. She will need to receive Spinraza every 4 months for the rest of her life.
Rose’s parents, Karen and Thomas, are very progressive regarding her treatments and lifestyle management and their determination with Rose’s therapies has led to a very impressive progression in her physical abilities. Her progress has even surprised the medical professionals and Rose continues to exceed their expectations. This progression is mainly due to the intensive physiotherapy which Rose attends twice a week and the incorporation of extensions of her physiotherapy routine at home on a daily basis. After 3 years of twice weekly physiotherapy, Rose can now stand with aid for 10-15 seconds, which is MAJOR for a child with SMA Type 1, but as you can imagine, the journey ahead is daunting. This private physiotherapy alone comes at a cost of approximately €10,000 per year. Caring for Rose is a full-time job and Karen provides this care as well as running the house and being mom to Rose’s older sister, 6-year-old Kate, while Thomas is away working as a truck driver. She regularly meets with her multidisciplinary healthcare team to ensure that Rose is getting the best possible treatment and her determination is also a fundamental element in Rose’s progress.
This Summer, Rose will undergo Spinal Surgery to insert spinal rods which will hopefully treat a significant curvature on her spine caused by scoliosis, due to the postural muscle weakness within her body. Early intervention is key to long-term success in treating this aspect of the condition. The surgery is considered high risk for Rose due to her condition but necessary so that Rose can progress further. As Rose is undergoing this surgery at such a young age, she will require twice yearly medical procedures to adjust the spinal rods that will be fitted during the initial surgery, to compensate for her growing body.
For you or I, even 1 surgery per year would be daunting, however, for 4 year old Rose, she now faces 5 major medical procedures on a yearly basis for the foreseeable future to treat her SMA and her scoliosis.
The current Covid pandemic has raised some serious concerns for Rose as respiratory illnesses are a common feature of SMA Type 1. This could also be detrimental to Rose as her lack of muscle tone in general can make common infections very serious. Previously Rose has been hospitalised as a result of what would be considered minor chest infections to her peers. This has made Rose's life quite isolated, so while she may see her cousins often enough, she does not see her friends for any social outings. Karen does her best to ensure that Rose lives with a relatively normal quality of life but needs to protect her from these common ailments. Keeping Rose healthy while providing a normal life is a constant worry and battle for her family, Karen, Thomas and her big sister Kate.
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 be 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. It is Karen and Thomas’s 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. Not only would this be a monumental triumph for her it would also be a monumental triumph for everybody who has and will be involved in her painful yet beautiful journey.
We would move mountains for our children to give them the best possible life and facing a life with SMA 1 comes with extremely unique mountains.
There is a long list of equipment, facilities and therapies that Rose will need to ensure a decent quality of life. As she grows, so does this list but there are certain standards that must be achieved now to give Rose the physical environment to maintain her progress and build further on it. In the immediate future, Rose’s condition will require a wheelchair accessible ground floor extension and alterations to the existing family home to address the needs of a wheelchair dependent occupant. There are also many pieces of equipment that Rose will need as she grows and learns to gain her own independence, such as a wheelchair, an ergonomic car seat, a wheelchair accessible family car and more. There are also many other pieces of equipment which have been recommended by her physiotherapist which are cost prohibited for the family at present. There are a range of further therapies available which also come with a cost but would certainly improve Rose’s quality of life. Rose requires extensive hospital visits which incur their own costs and because Karen is the primary carer, there is only a single wage coming into the house.
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.
We would like to thank you for your support during our campaign.
Please check out our website for further information and links to our social media accounts.
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