Published: 00:01, 26 April 2017
A little girl suffering from a debilitating disease started life-saving treatment on her second birthday, despite fears she would not make it to two.
Helena Russell, who has type 1 spinal muscular atrophy (SMA), a genetic condition affecting the nerves that control muscle movement, must initially travel to Paris every two weeks to receive the ground-breaking treatment.
The toddler, from Birchington, cannot yet access it in the UK due to insufficient NHS funding, so her family have been desperately fundraising through the Help for Helena campaign to cover the costs, which amount to £3,000 per visit.
Thanks to generous donations, she has been able to start receiving the medical help in France.
The treatment has been proven to halt and reverse the devastating prognosis of SMA, which robs children of their physical abilities so they are unable to move their limbs, smile or, eventually, breathe.
Her mother Charlotte, of Stone Barn Avenue, says Helena, who was diagnosed at eight months old, is coping well so far.
“She gets tired – we have to travel to get there, stay in a hotel and then go to the hospital for the treatment and it wears her out,” she said.
“But she’s always been quite strong for someone with type 1.”
The treatment involves a drug being administered via a lumbar puncture, an injection into the spine.
Helena will have four doses over the first two months and then will continue to have it every four months.
“The drug is available in the UK at Great Ormond Street Hospital but, because of NHS funding, only to around 10 children – 100 are not able to access it,” said Charlotte.
“We don’t know when Helena will be able to have it over here so we fund it ourselves at the moment thanks to people being so generous with donations and fundraising we’re doing.
“Without treatment the prognosis for Helena was that she’d continue to lose her ability to move her limbs, to play, to talk, to smile, to swallow and eventually to breathe.
“We can’t express how overwhelmed we are and grateful that everything that can be done for Helena is now being done.
“Reading about SMA, all the sources say a type 1 will be extremely unlikely to live until their second birthday, so Helena’s second birthday had a double reason to celebrate with her treatment starting as well.”
The family are aiming to raise £10,000 for her treatment.
More by this authorMarijke Hall
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