In her short life of 2 years and 5 months, Rosie spread happiness with her beautiful smile. Despite her inability to move around or eat, she was a happy little girl and brought joy and inspiration to those who spent time with her. A local volunteer, dealing with personal challenge, including a recent divorce, found comfort and gratitude through regular visits to see Rosie. Rosie’s resilience and positivity inspired everyone around her to see things differently.

Through our efforts and your generosity last year, I (Lloyd), Lauren (my sister), Gareth, Alex, Paul and Dave (life long friends) raised over GBP 15k for Spinal Muscular Atrophy (SMA) UK by running a half-marathon in 10 year memory of my daughter Rosita (‘Rosie’) passing.

In a continuation of efforts this year, on 9th August 2025, Gareth, Dave and I are taking on a 24k trail run in the Brecon Beacons. It will be a different challenge in an amazing setting fitting for Rosie's memory, and no doubt she will be with us on the day.

SMA is a rare neuromuscular disorder resulting in the loss of motor neurons and progressive muscle wasting, making simple tasks we take for-granted, such as sitting, walking or swallowing very difficult and eventually impossible. Rosie was diagnosed with SMA ‘Type 1’ at 11 months of age at a time when reversible or containable medicine was not available.

Science and medicine have advanced in the last 2-5 years, to the degree that some children have a better chance of a normal life with early diagnosis, but medicine is still very expensive and only available in certain countries.

Our lives were touched by many kind people and charities in their support of making Rosie’s life as comfortable and as fun as possible.

The objective is to run a 24k trail run in the Welsh mountains on 9th August to raise a further bucket load of cash to help positively impact the lives of children like Rosie, born with this genetic condition, lead a longer, better quality of life. Me and my wife, Negin and family/friends, truly appreciate any funds you can spare to add to Rosie’s fund-raising memorial.

Established for over 30 years, SMA UK are a charity that supports, campaigns and advocates so that everyone affected by Spinal Muscular Atrophy can access the best care, services and treatments, and benefit from continued research. We offer adults, young people, parents, relatives and friends emotional support, practical advice and guidance from our experienced team and provide reliable health and social care information about SMA. We also provide and distribute free multisensory toy packs for infants who are diagnosed with SMA.

Thank you so much for supporting.