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Birchington mum Charlotte Russell hopes daughter Helena will get treatment to save her life

A Birchington mum has launched an appeal to raise awareness for her daughter’s fight against a debilitating disease.

Helena Russell is 10 months old and has been diagnosed with Type 1 spinal muscular atrophy (SMA), a genetic condition which affects the nerves that control muscle movement, the motor neurons.

Helena’s mother Charlotte first noticed signs of the condition shortly after the birth, noticing that she would not put any pressure on her front legs at six weeks old but was told by friends not to worry as children grow up differently.

Charlotte Russell with her daughter Helena
Charlotte Russell with her daughter Helena

By the time Helena reached six months Charlotte took her daughter to the doctor, concerned that she could only move her ankles and not bear any weight on her legs.

She was sent away with concentration exercises for the muscles and it was only after several trips back to the hospital that she was sent to a specialist children’s hospital at St Thomas’ in London, two months later, for neurological assessment.

It was here that Helena received the diagnosis of SMA.

Helena Russell has been diagnosed with spinal muscular atrophy
Helena Russell has been diagnosed with spinal muscular atrophy

Charlotte, 29, of Stone Barn Avenue, said: “When we were given the devastating news that our beautiful daughter did indeed have SMA, I felt like all I could think about in the first few days was that my baby girl was going to die and I cried many tears.

“But, soon I turned my attention to trying to find out as much about SMA as possible and if there was anything at all that could possibly help her.

“The thought of watching my daughter gradually losing her ability to move to the point at which it is highly likely she will develop respiratory difficulties and be unable to eat without a feeding tube feels like a nightmare no parent should have to bear.

“It is very encouraging to read that a cure for SMA is being researched and it looks promising that one day there will be a cure for this devastating condition as long as the research continues to be funded appropriately.

"I felt like all I could think about in the first few days was that my baby girl was going to die and I cried many tears" - mum Charlotte Russell

“However what I find frustrating is that I cannot access these treatments, that could be life changing and prolonging for Helena.

“All trials focus on children either before seven months of age or after two years of age and they are also much better funded in America.

“As this is the only chance of treatment for my daughter I would like to raise money and take her abroad for a chance of treatment, but trials stipulate that the recipients must live within a limited travelling distance of the treatment clinics.

“It’s hard to know and feels so cruel that there are treatments in existence that could dramatically improve or even save the life of my daughter and other children like her, but they are not available to us.

“It’s my job to protect my children, to keep them safe, ensure they feel loved and to advocate for them when they cannot do this for themselves.

“All the time Helena is well I am determined to do whatever I can to get her treatment that may make her better and my hope is that Helena will get treatment that will save her life.”

For more information on Helena’s journey and to view her photos and videos visit the Facebook site.

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