Edward Willis-Hall was diagnosed with SMA type1 when he was 7 weeks old. SMA is a rare inherited genetic condition that causes the nerve cells in the spinal cord that control muscle movement to gradually stop working. As these nerve cells are lost, the muscles become week and shrink ( atrophy ).

At the time Edward was diagnosed, he was given a devastatingly short life expectantly.

Fortunately, there was a life changing drug, Zolgensma (a single injection that slows the disease progression), however, at that time it was not available on the NHS but could be purchased privately for…£1.7M!! The world’s most expensive drug at that time.

His family campaigned for Zolgensma to be available on the NHS. After months of anguish, Zolgensma was approved by the NHS and in August 2021, when Edward was 11 months old, he received the life changing treatment.

Edward is now a bright, bubbly 5 year old who lights up the room when he enters. Edward is still reliant on his wheelchair, but with regular physio therapy, he can strengthen his muscles and place less reliance on his wheelchair.

Th NHS provides 12 hours of funded physio therapy per year, but Edward NEEDS 3 sessions a week at a cost of £100 per sessions to really benefit for the Zolgensma injection.

His whole family fundraiser when he was first diagnosed but those funds are coming to an end.

To give further support to Edward I have volunteered, along with some of his other family members, to run from Clacton Pier to Walton Pier and back to raise sponsorship for Edward’s charity. This is assistance of more than 22km, equivalent to more than half a marathon!

We would be so grateful if you could sponsor me, every pound that’s raised will really make a life changing difference for Edward.

If you have a spare 5 minutes of your day, please Google Edward Willis-Hall to see what an inspiring child Edward is and to see more details of his journey so far.