Mum of boy with muscle-wasting disease left with logistical nightmare

The mother of a young boy with muscular dystrophy has called for better support for disabled children.

Leanne Gateley, whose five-year-old son Max suffers with the muscle-wasting condition, said she had been left facing massive difficulties with the daily school run.

The problem has arisen after her daughter Amy, aged three, was denied a place at the primary which is closest to the special school that Max attends.

Ms Gateley, from Lancaster, vented her frustration in an interview with her local newspaper and argued that more needed to be done to support the families of children with disabilities.

“I am now faced with the prospect of having to get Amy to a school which at best is 25 minutes’ walk away, up and down two steep hills in Radcliffe, with a wheelchair, there and back twice a day,” she said.

“I will have no other option but to take Amy first and pick her up last. This is completely unacceptable.

“The other option is to take Max first and be late with Amy every day which will ultimately render me in breach of the law.”

Max was first diagnosed with Becker Muscular Dystrophy in 2013 and relies on a wheelchair to get about, making travelling long distances exceedingly difficult.

Robert Meadowcroft, Muscular Dystrophy UK’s chief executive, said: “Life can often be hard for parents of children with long-term disabling conditions, like muscular dystrophy, but it shouldn’t be.

“Parents can often feel isolated and alone in trying to understand the condition, as well as having to cope with a new and often unexpected diagnosis.

“We want parents to know they are not alone, we are here for them, and will help them fight for what they are entitled to.”

  • At EnViva Paediatric Care, our experienced staff can provide complex nurse-managed homecare for babies, children and young people with a range of disabling conditions including muscular dystrophy. For more information about the services we provide, please contact us today.