making muscle wasting history

Why I support Action Duchenne

When a child dies suddenly as a result of an accident, or is murdered, it is usually a matter of public interest, and quite rightly, everyone’s hearts go out to the parents. There is often a public outcry – the driver must be punished, the murderer must be found.

Equally deserving of our sympathy are those parents who are literally watching their children die before their eyes. It is a painful and unstoppable process for those parents whose children have a degenerative disease like Duchenne muscular dystrophy.

No sooner have these children taken their first steps than they begin the downward spiral that leads first to dependency on a wheelchair (around age 10) as their muscles lose the protein (dystrophin) that gives them their strength, then to loss of other muscles in the arms, hands, digestive system, heart, lungs……by which time they are totally dependent on others to care for them and to keep them alive.

Parents watching their innocent children die a slow and painful death deserve our outrage every bit as much as those who lose their children suddenly – not more or less, but every bit as much.

Sadly, these parents are left to get on with it, and to cope as best they can with the situation. They will get statutory help, but often it is too little, too late. Their homes can be adapted to help them to cope with such a dependent child/young adult, but the sufferers needs change quickly and what is right for an 8-year-old with ‘poorly legs’ will not be adequate for a growing teenager who cannot even stand up unaided. And woe betide them if their relationship doesn’t stand the strain of caring for a disabled child and they end up with two homes in need of adaption.

I know from meeting many of these parents that not only do they have to cope with the grief of watching their child die, they also have constant battles with authority – teachers who don’t understand the condition and think the child is being lazy, or deliberately difficult, healthcare authorities who just do not have the resources to give the care that could prolong and enhance the child’s life.

There are around 2000 families living in the UK and coping day-to-day with this disease. In statistical terms, it is not a huge number, which is why it doesn’t receive the same amount of research and support as other conditions. But the suffering for the individual is just as great as the loss of any child.

These people deserve our support, and that is why I will be lobbying Parliament on 15th June to ask our Government to establish Centres of Excellence across the country, to ensure that people suffering with this condition (and other neuromuscular conditions) are able to obtain the best care regardless of where they live. Expertise gained in these Centres of Excellence will then be able to inform professionals dealing with Duchenne children and young adults to give them the support they need.

Most of all I will be asking the Government to support funding for research into a cure for this devastating disease. So much work has been done in recent years to find a treatment or cure, and it is tragic to see people with Duchenne deteriorating before our eyes while we wait for the breakthrough that must surely come soon.

Please join me in supporting this cause. Visit www.actionduchenne.org to find out more about the lobby and how you can help our Race Against Time.

Duchenne muscular dystrophy – the lighter side.

Although the need for help is urgent, living with a Duchenne sufferer is by no means all doom and gloom. Matthew is always smiling, always seeing the fun in life and always seeking ways to do the things that his body makes difficult.