Fundraising Campaign for 4-year-old Kerry girl with rare genetic condition
A group of family, friends and local community members have volunteered to organise a fundraising campaign on behalf of Rose O Flaherty, Ballymacelligott, Tralee, Co Kerry. This is Rose’s plight in her own words: “Mommy, when will I be able to hold your hand to walk to school?” Rose 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. 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,
she regularly asks extremely difficult and heart-breaking questions such
as “Mommy, why can’t I play like the other kids?” and “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 for Rose involving intensive therapies, many surgeries and specialist equipment but financial support is crucial.
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:
Here in Connect we will be checking in each month with family and fundraisers to see how its all going and keeping you the reader updated on progress, there is a lot to be done to help Rose, her house needs much modification to be suitable for her needs, not to mention the equipment she will need to give her life some quality.
This month one of the events is called ‘Daisy Does A Dump’. It’s quite funny really, They have 1000 tickets to sell at €10 per ticket and will mark out a field with 1000 boxes numbered 1-1000. They will then leave Daisy, the cow, into the field and wherever she poops first and most is the winner of the prize. The prize is a 2 night stay with dinner on one evening for 2 people in the Ballygarry Estate and Spa.
Contact : Conor Ellard 087 290 3407 or
Catherine Baily 087 248 7523
If you met this vivacious little girl like we have you would want to do so much for her, her bright positive enthusiastic smile and outlook on life is a lesson to us all.
So we would ask you to join us as we do our best to raise as much as we can to get things happening for this amazing little girl.