Sidney suffers from spinal muscular atrophy
Sidney Cooke from Yalding, Kent, aged 23 months, was diagnosed with the rare genetic disorder type one spinal muscular atrophy (SMA) four months after he was born.
£1.8million
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.
No cure
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, 34, said: ‘Sidney is currently part of a drug trial for Spinraza in Barcelona, so we have to pay for flights and accommodation for that, as well as specialised physio in Essex, orthotics from Italy, and much more.’
‘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.’
Family friend Adam Bevis, 37, from Orpington will be running the Brighton Marathon this weekend to raise funds for the family.
He said: ‘I have always wanted to push myself and run a marathon. Training has been tough as I have two young children myself, who aren’t the best sleepers!! However, I’m delighted to be able to help raise funds to get Sid the equipment he needs to help make his mobility as best as possible. His little face will help get me through when the run starts to get tough.’
Sidney’s family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Sidney with healthcare needs and provides charity status to benefit from gift aid, corporate support while also providing donor reassurance.
Tree of Hope CEO Gill Gibb said: ‘We’re really pleased to hear that Sidney is getting on so well and wish Adam all the best with the marathon.’
To sponsor Adam or to donate to Sidney’s fund visit: https://www.treeofhope.org.uk/help-super-sid-fight-sma-type-1/ or https://www.justgiving.com/fundraising/runningforsid