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Paul's Fundraising Story

27 June 2017

Paul's Fundraising Story

Here, Paul shares memories of his daughter, Leona, who had SMA Type 1 and sadly passed away, and why he was inspired to start raising funds for SMA Support UK. Paul will be taking on the 2017 Great North Run on 10th September:

Our daughter Leona was born eleven years ago this August. She was a much loved and wanted first child and the first few weeks of her life passed by in the usual haze of sleepless nights, over-excited relatives and occasional moments of sanity. At her six week check her GP spotted that she wasn't moving as well as she should and referred us on for specialist assessment. This culminated in her being diagnosed with Type 1 Spinal Muscular Atrophy which came with the devastating news that she would be unlikely to live long enough to see her first birthday and that being a genetic condition any future pregnancy would carry the same one in four chance.

Leona sadly only lived for a few weeks after her diagnosis leaving us with three months of precious memories.

A lot has happened in the years following Leona's short life and we have been lucky enough to have two healthy daughters who regularly hear stories about their older sister. Having spent far too long cycling and running in recent years, I want to raise funds for SMA Support UK to help those who continue to be affected by SMA. Please sponsor me to run the Great North Run later this year and help by giving whatever you can using the 'Give Now' button. The more people that know about Get out There for SMA, the greater the impact, so please also spread the word by sharing my page with your friends and family. Thank you in advance for your generosity, it means a lot!

You can donate to Paul's fund by clicking on the link below:

Paul's Everyday Hero page