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Spinal Muscular Atrophy is the biggest genetic killer of under 2s. Around 1 in 60 people in the UK have the defective gene, approximately 1.5 million people, but even when two gene carriers produce a child, there is still only a 1 in 4 chance the child will be affected and a 1 in 2 chance they will themselves be a carrier, therefore the family may be completely unaware.
Elsa was a normal 6 month old until she contracted bronchialitis in December 2014 and was then subsequently diagnosed with SMA Type 1. SMA affects the motor neurons and is the child version of MND (think ice bucket challange) and Type 1 is so severe that around 90% of all children pass away before their second birthday. Elsa passed just 6 weeks after diagnosis.
I'm growing a tache for November but instead of Men's Health, I'm donating my fundraising to The SMA Trust in the hope that they will one day find a cure for this terrible disease.