I don’t know Edward, but like most parents lost in an emotional swell of nappies, nursery and notes to Santa, when I see his face, I instantly see in him my own son, or the imagined face of a son or daughter yet to come into the world.
I was aimlessly scrolling Instagram when I first saw him – a picture of innocence, lying in hospital, a tiny feeding tube protruding from his nose. The comedian Daisy May Cooper had shared Edward’s image on her story feed – urging people to help. I donated then and want to use this opportunity to donate again.
Edward was born on 7th September 2020 and diagnosed with Spinal Muscular Atrophy (SMA) type 1, at just 7 weeks old.Spinal Muscular Atrophy (SMA) is a rare, genetic neuromuscular condition causing progressive muscle wasting (atrophy) and weakness leading to loss of movement. This can affect crawling and walking ability, arm, hand, head and neck movement, breathing, and even swallowing.One can only imagine the hammer blow delivered to his parents Megan and John upon hearing this most awful news. The pair say as much in their joint note on Edward’s Just Giving page, describing a world “turned upside down in the most extreme way”.
Although there are treatments available to help prolong Edward’s life, his family have set up the Just Giving page to raise funds for a new and advanced, pioneering treatment called Zolgensma – a gene therapy medicine that targets the genetic root cause of SMA. This is a one-time-only dose and replaces the function of the missing or non-working survival motor neuron 1 (SMN1) gene with a new, working copy of a human SMN gene. This miraculous sounding treatment is only available in the USA and as such, comes with an extraordinary price tag – £1.2m.
Megan and John have already reached the incredible milestone of £80,000 – but so much more is required to help get them over the line. I hope people will follow our lead in donating what they can to this cause, showing an innocent little boy some much needed kindness in this most cruel of years.