Family come to terms with Duchenne diagnosis

A mum has spoken about the difficulties which face the families of those diagnosed with a severe muscle-wasting condition.

Sarah Coates was devastated to discover that her son Ty has Duchenne Muscular Dystrophy, a disease which could mean that he is effectively confined to a wheelchair by the time of his 12 birthday.

The seven-year-old, from North Shields, received a formal diagnosis last May.

Doctors have said that Ty’s life expectancy could be anywhere between 18 and 30-years-old – there is not presently a cure for the condition.

Although the progression of muscular dystrophy can vary, it is typical for mobility to be severely impaired by the time that a youngster enters their teens.

Speaking to the Chronicle, Sarah said that the news had turned the family’s life “upside down”.

She explained how the family first became concerned when they noticed that Ty was walking on his tiptoes at the point of starting school, but doctors had originally reassured her that her son would grow out of it.

“Then last year, one of his teachers said there was something wrong,” said Sarah. “Ty was falling over all the time and he was struggling to keep up with everybody else.”

A series of tests confirmed the problem and the schoolboy has been put on medication in an effort to alleviate his symptoms.

His older brothers, Jason and Chris, were determined to do something and have been busy helping to organise a series of fundraising events, with the proceeds going to Muscular Dystrophy research. Their ultimate hope is that a cure may be found for their sibling’s condition.

  • 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.