A CAMPAIGNING South Tyneside mum fears red tape and lack of cash could rob her three sons of pioneering treatment for a rare medical condition.
Layanne Wright this week appealed to the Government to protect funding for pioneering drugs for Becker muscular dystrophy.
Ms Wright, 34, from Boldon Colliery, has three sons – Edward, six, Sam, nine, and two-year-old Joseph – who all suffer from the condition.
But Ms Wright is worried that changes to NHS drugs funding could delay or even deny vital treatment for her sons.
Although a new genetic therapy called Exon Skipping could help treat her sons, the cost of the treatment could run into hundreds of thousands of pounds.
Evidence from the Boldon family was part of a hard-hitting report compiled by the All-Party Parliamentary Group for Muscular Dystrophy presented to the Health Minister yesterday.
This followed a six-month parliamentary inquiry into how the revamped NHS will prescribe expensive rare disease medicines as more devastating genetic conditions become more treatable.
Ms Wright said: “We first started noticing that something was wrong when Edward was late in hitting childhood milestones, like learning to walk and run and jump.
“It was over a year after first visiting our GP that we finally learned that Edward had Becker muscular dystrophy.
“Shortly after, it was confirmed that brothers Joseph and Sam also have the condition.”
Ms Wright added: “The condition has really taken hold of Edward, he can’t walk very far.
“He gets really tired and we are probably going to have to look into getting a wheelchair this summer.
“We’ve put our all into raising funds to back research into effective treatments – it has helped us to cope.”
Ms Wright stressed that the earlier her sons receive treatment, the more likely it will prevent more damage to their muscles.
She said: “As more breakthrough treatments are found, it would be devastating to see funding issues and red tape around the assessment of drugs to prevent them from reaching our children, who desperarely need them.”
While potential treatments for the life-shortening and muscle-wasting Duchenne muscular dystrophy are now in clinical trials, MPs fear convoluted drug assessment processes, funding issues and lack of specialist care could delay or block treatment to those with rarer medical conditions, such as the three brothers.