As some of you know, my nephew Edward Willis-Hall was diagnosed with SMA type 1 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 weak and shrink (atrophy).

At the time Edward was diagnosed he was given a devastatingly short life expectancy. Fortunately, there was a life changing drug, Zolgensma (a single injection that slows the disease progression), unfortunately at that time it was not available on the NHS but could be purchased privately for…….£1.79m!! The world’s most expensive drug at that time

Our is 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 and bubbly 5 year old who lights up a room when he enters it. Edward is still reliant on his wheelchair, but with regular physiotherapy he can strengthen his muscles and place less reliance on his wheelchair.

The NHS provides 12 hours of funded physiotherapy per year, but Edward NEEDS 3 sessions a week at a cost of £100 per session to really benefit from the Zolgensma injection.

As a family we fund raised when he was first diagnosed but those funds are coming to an end.

To give further support to Edward I have volunteered, along with other family members, to run from Clacton Pier to Walton Pier and back to Clacton Pier on Saturday 18th July 2026 to raise sponsorship for Edward. This is a distance of more than 22km, equivalent to more than half a marathon!

Please could you sponsor me, every £ raised will really make a life changing difference for Edward

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

Sent from my iPhone