We sadly lost our beautiful and brave daughter Isabelle, on her 7 month birthday, to the neuromuscular disease spinal muscular atrophy type 1 (SMA 1).

SMA 1 is a cruel, rare, severe, life limiting condition causing progressive muscle weakness, taking away the ability to move, eat and in the end, to even breathe. There is currently no cure for SMA 1.

Despite Isabelle’s physical limitations, our precious daughter brought us immense love and happiness. We shared many special moments together each day with her enthusiasm for playtime (especially puppets, ribbons and bath time!) and love of cuddles. In her 7 short months she brightened every day with her sparkly eyes, beautiful smile and wonderful babbling.

On 26th September we will be doing a 50km Thames bridges walk from Tower Bridge to Hampton Court in memory of Isabelle, to raise money for SMA UK, the charity that supported us throughout her short life.

SMA UK have been an incredible support to us from the time of Isabelle’s heart-breaking diagnosis, providing information, counselling and practical advice. We hope to raise money so that SMA UK can continue to help families affected by this devastating disease.

Mark & Rachel