When you describe someone as muscular, you mean that person has strong muscles, is brawny, is strong, and is vigorous. When a doctor tells you that your child has one of the many forms of muscular dystrophy, he or she is telling you that your child's muscles will fail them as they grow. Because of a gene mutation at the time of or before conception, your child's body will not produce any protein called dystrophin. This protein keeps muscles healthy. Once muscles can't repair themselves, they lose the power to operate - at first to operate efficiently, and over time to operate at all.
While other forms of muscular dystrophy may entail an adult life confined to a wheelchair, if your doctor tells you your child has Duchenne muscular dystrophy - your son to be precise, for this disease mainly affects young boys and men - he will be lucky to enjoy any adult life at all.
Duchenne is the number one genetic killer of children in the world. It affects one in every 3,500 boys born worldwide. Duchenne muscular dystrophy means that your son will die before you do.
There is a great deal of tragedy in this world but can you think of a more tragic situation than knowing your little boy is going to die a long time before you do? And you'll have to watch him travel that journey every faltering step of the way? This is the heartbreak of Duchenne parents.
One other bit of bad news, if you were thinking 'genetic' means DMD runs in families, that your family will be spared: in at least one third of cases, the genetic mutation happens spontaneously - that is, without any previous history. There is a chance - perhaps not as small as you might think - that your son or daughter may become a parent of a child with Duchenne muscular dystrophy.
But there is hope and it's here right now... Science is rapidly coming to grips with genetic diseases. Scientists around the world are researching many options for a cure for Duchenne muscular dystrophy. There is also a great deal of research into development of therapies, prolonging mobility and the strength of the limb and breathing muscles of boys with DMD. We hope to buy these boys more of their most precious commodity: time.
The effort is working. In the 1960s, the likelihood of a boy with Duchenne muscular dystrophy reaching the age of 25 was zero. By the 1980s, 12% of boys with DMD lived to 25. By the late 1990s, this had climbed to 53%. Tremendous progress.
The very best help is to get more research done worldwide, and faster. Importantly, Australia is a leading contributor to real science being carried out today in an effort to find cures for Duchenne and other muscular dystrophies. Progress, but the research effort needs to be accelerated. Parents are fighting hard but we need your help. Every year many boys lose their fight against DMD.
Motivated by the fact that the clock is ticking for their boys, that their boys can't lobby for desperately needed research funds themselves, brave and determined parents have dedicated themselves to find the funds for the research that will extend and improve - and possibly save their sons' lives.
And we'd like you to help them with your support.
The ball is in your court - Catch!
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