Laura Healy - Running for Tilly and SMA UK
Laura Healy
My Story
Thanks for taking the time to visit my fundraising page. I will be running the 2022 London Marathon on 2nd October to raise money and awareness for SMA UK.
SMA UK is a brilliant charity which is important to many families, including my own.
In August 2016, my niece, Tilly, was diagnosed with SMA Type 1 at just eight weeks old. None of my family had heard of SMA, but at the time it was the leading genetic cause of death in babies. It is a devastatingly cruel disease which causes muscle weakness and progressive loss of movement. Babies and children with SMA will struggle, not only to reach all the usual milestones like sitting up and crawling, but everything we all take for granted: walking, talking, eating, even breathing. Babies with SMA face uncertain futures, however, due to amazing research and developments in treatment, children are surviving and their futures are looking brighter.
SMA UK raises funds for continuous research into treatments as well as providing support and information to families, raising awareness and working to improve access to drug trials, equipment and adaptations. All of which are so vital to families affected by SMA.
Tilly is now five years old and thanks to being part of an expanded access programme for the drug, Spinraza, she is doing really well. She is a courageous and spirited little girl, who loves pink, Rapunzel and Guinea pigs. Of course, life isn’t always easy, but nevertheless, she attends school, goes to Rainbows and brings joy to all of us. She is an inspiration, always smiling, relentlessly happy, and I couldn’t be prouder to be her Auntie.
I will be running the marathon to raise awareness of SMA and to help SMA UK raise much needed funds, but also, for Tilly, her mum and dad and big brother, Charlie. As a family they have faced the worst news, but they never lose hope. They are strong, and with them by her side, every day is a happy day for Tilly. And so, I am running for them, and all the families living bravely with SMA.
Thank you so much for your support. It is very much appreciated.
Laura x
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Target
£3,000
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Raised so far
£2,676
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Number of donors
62
My Story
Thanks for taking the time to visit my fundraising page. I will be running the 2022 London Marathon on 2nd October to raise money and awareness for SMA UK.
SMA UK is a brilliant charity which is important to many families, including my own.
In August 2016, my niece, Tilly, was diagnosed with SMA Type 1 at just eight weeks old. None of my family had heard of SMA, but at the time it was the leading genetic cause of death in babies. It is a devastatingly cruel disease which causes muscle weakness and progressive loss of movement. Babies and children with SMA will struggle, not only to reach all the usual milestones like sitting up and crawling, but everything we all take for granted: walking, talking, eating, even breathing. Babies with SMA face uncertain futures, however, due to amazing research and developments in treatment, children are surviving and their futures are looking brighter.
SMA UK raises funds for continuous research into treatments as well as providing support and information to families, raising awareness and working to improve access to drug trials, equipment and adaptations. All of which are so vital to families affected by SMA.
Tilly is now five years old and thanks to being part of an expanded access programme for the drug, Spinraza, she is doing really well. She is a courageous and spirited little girl, who loves pink, Rapunzel and Guinea pigs. Of course, life isn’t always easy, but nevertheless, she attends school, goes to Rainbows and brings joy to all of us. She is an inspiration, always smiling, relentlessly happy, and I couldn’t be prouder to be her Auntie.
I will be running the marathon to raise awareness of SMA and to help SMA UK raise much needed funds, but also, for Tilly, her mum and dad and big brother, Charlie. As a family they have faced the worst news, but they never lose hope. They are strong, and with them by her side, every day is a happy day for Tilly. And so, I am running for them, and all the families living bravely with SMA.
Thank you so much for your support. It is very much appreciated.
Laura x
