Beckenham teacher taking on 10K for Yalding baby child with rare genetic condition

A Beckenham teacher is taking on the 10K London Winter Run to raise funds for a Yalding baby with a rare genetic disorder.

Emma Cooke, 41, who teaches at St John’s Primary in Penge, is taking on the race for Sidney Cooke, aged two. Sidney was diagnosed with the rare genetic disorder type one Spinal Muscular Atrophy (SMA) four months after birth.

He was treated with the £1.8m single dose of gene therapy Zolgensma – the most expensive drug in the world – shortly afterwards. Before this drug was made available, children with this disorder typically survived less than two years.

Emma said: ‘I’m not a runner, though I am a gym goer, but I’ve taken on other challenges in the past and I thought this was a good opportunity to both try something new and to raise some money for Sid.’

‘I can’t pretend I’m enjoying the training and I’m only up to about 6.5km so far but I will get there! Even if it’s hard it will be worth it to help Sid.’

There is still no cure for SMA, but drugs and therapies help manage the condition and improve strength and flexibility. However, most therapies and much of the equipment needed is not available on the NHS, and families have to fundraise to cover what is needed.

Sidney’s mum Sophie, 35, said: ‘Every piece of equipment typically costs thousands, even if we manage to buy it second hand, and obviously he is always growing and his needs are always changing.’

‘He is coming on leaps and bounds, he loves animals and can’t wait to go to nursery, but his progress relies on us being able to fund equipment and therapies to enable it. Which is why we are so immensely grateful to our friends, family and our supporters who help us provide what Sidney needs.’

Sidney’s family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Sidney with healthcare needs which cannot be provided by the NHS and provides charity status to benefit from gift aid, corporate support while also providing donor reassurance.

To sponsor Emma, visit https://www.justgiving.com/page/emma-cooke-1701726132681

For more information about Sidney or to donate to his fund, visit https://www.treeofhope.org.uk/help-super-sid-fight-sma-type-1/