Amira Nethercott, from Abertillery, Monmouthshire, has spinal muscular atrophy (SMA) type one which, without treatment, often claims the lives of children by the age of two
A family is leading a desperate battle to save the life of a toddler who has a rare genetic condition.
Amira Nethercott’s outlook was bleak when, as a newborn, she struggled with her movement and breathing. Doctors diagnosed the tot with spinal muscular atrophy (SMA) type one, which causes limbs to become floppy, as well as chronic bone and joint problems.
Without treatment, the condition claims the lives of children by the age of two. Amira is now 18 months old and mum Kainat, 24, and Cairan, 26, are concerned. They’re desperately crowdsourcing for the crucial gene therapy called Zolgensma, which costs thousands of pounds.
Amira’s parents, from Abertillery, Monmouthshire, have described the therapy as “light at the end of the tunnel” after a difficult 18 months. Recalling Amira’s diagnosis, dad-of-two Cairon said: “I pretty much knew from there it was positive, and she did have SMA. We walked in the room and there were like five or six consultants there. They broke the news.”
The diagnosis at Noah’s Ark Children’s Hospital for Wales in Cardiff happened days after Amira’s six-week check-up, where doctors had their suspicions. Cairon added: “It originally started when we noticed that she wasn’t moving as much as she should be. So we were kind of worried.”
But the Zolgensma, available on NHS in England but not in Wales, offers babies and toddlers fresh hope. It would boost little Amira’s chances of living beyond two and enhance her quality of life thereafter. SMA type one is the most severe, with types two, three and four less problematic, reports South Wales Argus.
Kainat added: “No one can tell us for certain how long Amira has. Each day is a blessing, but it also carries the weight of the unknown. The cost of Amira’s ongoing treatment, which includes physiotherapy and other essential therapies, is staggering. We’ve already exhausted our savings, and the financial burden is overwhelming.
“Every pound you contribute will go towards ensuring Amira continues to receive the care she so desperately needs. Physiotherapy, occupational therapy, and specialised treatments have become a lifeline for our little warrior.” To view the fundraiser and donate, visit https://t.ly/a58jE or click here.