A few weeks after he was born, my gorgeous boy Teddy, was diagnosed with Spinal Muscular Atrophy Type 3. It’s a rare genetic condition that causes progressive muscle wasting and weakness.

Screening for SMA isn’t routine in the UK yet, but Stoke Mandeville hospital is part of a trial testing new borns and gathering data. We were fortunately asked if we’d take part, said yes, signed the forms, and thought nothing of it.

The positive diagnosis was obviously a huge shock, but the fact we found out pre-symptomatically means we have a head start on managing the condition. Teddy is on a daily drug called Risdiplam, which has only been available on the NHS since 2021, and should help fend off the worst of the condition.

The Skydive is one of many events happening this year to celebrate 40 years of the SMA charity. Every penny you donate will go to SMA UK and help fund life saving research, treatment and care, for people with all types of the condition.

For more information about SMA, please see here: https://smauk.org.uk/support-information/about-sma/sma-summary/

Perhaps one day Teddy will skydive too, but for now, I’m jumping out of plane on his behalf. Thanks so much for your support.

James