A MOTHER has made a heartfelt plea for donations to help her four-year-old son receive potentially life-saving treatment abroad.
Heather Bond, 30, who moved to Liversedge from Chesterfield six years ago, received the horrifying news during the last lockdown that her toddler, Eli Newsome, had a super rare, progressive brain disease, called Leukodystrophy.
Doctors told Ms Bond and Eli's dad, James Newsome, that their son might only live for another five to 10 years.
Leukodystrophies are a group of disorders that cause deterioration of the white matter, or myelin, in the brain.
This is a protective covering of the nerve and nerves cannot function normally without it.
Each type of Leukodystrophy affects a different part of the myelin sheath, leading to a range of neurological problems.
This includes issues with movement, vision, hearing, balance, the ability to eat, memory, behaviour and thought.
The family's nightmare began to unfold during the last lockdown.
Ms Bond, who works in a care home, said: "Last lockdown, Eli woke up and couldn't function his legs - it was like he was drunk.
"I thought he had slept funny, but after two days of falls every time he tried to walk, I took him to A&E."
The 30-year-old mum said the hospital told her Eli had irritable hip syndrome and that it would clear up in two weeks.
Ms Bond said: "It didn't, so I called them back and they asked me to take Eli up to hospital straight away.
"It was then when he was sent down for a CT scan.
"They took two hours to bring me his results back - it felt like a lifetime and at this point, I knew something wasn't right."
The doctor told the family that Eli had "something wrong" with his brain and he needed to go for an emergency MRI scan at Leeds General Infirmary (LGI).
Two weeks later, the family received the devastating diagnosis.
Ms Bond said: "It was absolutely heart breaking.
"At the moment we are very lucky and Eli hasn't declined much at all.
"He uses a wheel chair for long distance, as his legs hurt and gets tired quickly."
The family were given a glimmer of hope when they discovered there is a Professor in Amsterdam who is running the first ever trial with a medical treatment for Leukodystrophy, that could potentially prolong, or even save Eli's life.
The four-year-old fits all the criteria and Eli and his mother are all set to fly out to the Netherlands to take part in the programme, with flights and a hotel paid for.
But they will have to survive over there for eight weeks and a GoFundMe page has been set-up, with the aim of raising £1,500 to help towards living costs.
Ms Bond said: "Eli's dad is staying at home with my daughter because life still goes on and he still has to go to work to provide for themselves."
So far, 52 donors have raised a total of £758.
If you would like to help the family out, click here to visit the GoFundMe page.
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