RACE TO RAISE FUNDS TO HELP LITTLE AMIRA
AFAMILY is in a race against time to raise funds for treatment to give their baby girl the best chance at life – and the potential to walk. Little Amira Nethercott, aged 18 months, was diagnosed with the rare condition of spinal muscular atrophy (SMA) type one.
And without treatment, spinal muscular atrophy claims the lives of children by the age of two.
But Amira has received hope – she is eligible for gene therapy called zolgensma to help improve motor function, which her family says is “a light at the end of the tunnel”.
However, her treatment is extremely costly and the family has already gone through their savings.
To help fund the treatment, Amira’s mum Kainat, 24, set up a Gofundme page to raise £20,000 – with nearly £4,000 being raised so far.
Babies with SMA type one show symptoms in the first six months, from weak and floppy arms and legs, problems eating, breathing and swallowing to being unable to lift their head.
Dad-of-two Cairon Nethercott, 26, said: “It originally started when we noticed that she wasn’t moving as much as she should be. So we were kind of worried.”
At a six-week check-up, doctors had their suspicions and Amira was given a test for SMA two days later.
They were later called into Noah’s Ark Hospital to receive the results.
Cairon, from Abertillery, added: “I pretty much knew from there that it was positive and she did have SMA.
“We walked in the room and there were like five or six consultants there when we attended the appointment – and they broke the news [to us].”
Since the diagnosis, Amira has limited use of her limbs and has respiratory weakness.
Kainat said: “While the treatment has halted SMA’s deadly progression, 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.”
Uncertain on whether this treatment will give Amira months or years with her family, they’re making sure to cherish every moment.
“It’s these therapies that enable her to make strides against this relentless condition, to defy the odds, and to experience the world in her own unique way,” said Kainat.
The community has also come together to organise events to help fundraise for Amira’s treatment.
Cairon added that the continuous support they have received has been “quite overwhelming”, adding: “There’s a lot of people that really do want to help.”