Merseyside family in race against clock to find treatment for battling three-year-old

Posted: Published on August 25th, 2014

This post was added by Dr Simmons

A mum whose son has a rare muscle-wasting condition says her family face a race against the clock to get the treatment he needs.

Rachel Halpins three-year-old son, Harry, has Duchenne muscular dystrophy a condition that causes muscles to waste over time, leading to increasing disability and eventually causing life-threatening heart and lung problems.

The 36-year-old, from Formby , is hopeful that one day a new treatment proven to slow down the ravaging effects of the disease will become available.

But she is worried that, if one does come on the market, because of red tape or funding problems, it may be too late to help Harry.

The Halpins are one of many hundreds of families backing the Muscular Dystrophy Campaigns Fast Forward scheme, which wants to ensure cutting-edge potential treatments for muscle-wasting conditions are not held up owing to lack of funds or drawn-out assessment processes.

Mum-of-two, Rachel, who lives with retail business owner Gareth, 36, said: Theres not a cure, but trials are going on that are coming up with things that can slow its progression down which obviously gives you more time and hopefully in that time they will find a cure.

This Fast Forward initiative is really important because if they do come up with a treatment, we cant wait for the treatment to go through red tape, we need it now.

Weve been told, at the moment, hes going to be in a wheelchair.

As time goes on, the disease will climb up and he wont be able to walk and as time goes on muscles in his body will slowly stop, eventually affecting his breathing. Weve been told this will happen in his early 20s or 30s but between seven and 12 hes likely to end up in a wheelchair, which is terrifying.

Harry was first diagnosed with Duchenne when he was two. Rachel had noticed he had problems with mobility and balance compared to other children and a doctor at Alder Hey confirmed her worst fears.

Continued here:
Merseyside family in race against clock to find treatment for battling three-year-old

Related Posts
This entry was posted in Muscular Dystrophy Treatment. Bookmark the permalink.

Comments are closed.