Trek for Tilly - Raising Awareness for SMA

On 28th May 2022 Tilly’s family and friends will be embarking on a familiar journey from Great Ormond Street Hospital, London to our home in Sawbridgeworth, Hertfordshire, some 30 miles, but this time with a twist. Instead of our usual drive for hospital treatments we will be walking the route to raise awareness and funds for Tilly and her condition Spinal Muscular Atrophy (SMA).

 

Tilly is five years old and has the muscle wasting condition SMA - Type 1. This means her muscles are extremely weak and do not function properly. She, cannot walk, sit without support or swallow. The disease also affects her respiratory muscles resulting in the use of a ventilator to support her breathing at night.

 

Upon diagnosis we were told that Tilly would not survive past the age of two, but at 10 months old she received the first approved treatment for SMA called Spinraza. This is an injection in the spine administered every 4 months at Great Ormond Street Hospital, and incredibly has helped to halt the progression of the disease and change her devastating prognosis.

 

Ground breaking treatment alongside lots of hard work and determination from Tilly and her care team means she is doing so well, and despite all the challenges she faces Tilly is the bravest and most amazing, princess mad little girl, who we are so very proud of.

 

We are walking this route, one that Tilly has travelled so many times already, to help raise awareness of the disease, but also to fundraise for two important causes. Firstly, Great Ormond Street Hospital who provide exceptional care and support for Tilly and so many children. And secondly Tilly herself, to help fund essential adaptations to her power wheelchair aiding her growing independence and to help provide vital hydrotherapy sessions which are not available on the NHS.

 

We are so very grateful and thankful for any donations to our causes.

 

With thanks

 

Team Tilly xxx