“The doctor told us we were going to have to watch our son waste away.” Alex explained “but I was determined to prove him wrong.”
Duchenne is a fatal genetic condition. It is a muscular disease whereby the muscles cannot heal and repair themselves, which leads to them slowly degenerating. It is an hereditary condition passed from a mother to her child, although ninety-nine per cent of those who actually have the disease are boys. You do not have to have Duchenne yourself to pass it on, but if you carry it in your genes, one of your children could be born with it.
Alex went on to tell us that there is little public awareness of Duchenne because it is given little publicity in the media. He explained quite bluntly that the reason for this is that there are no ‘survival stories’. There are frequently newspaper stories about people who have survived cancer and other serious illnesses, but because Duchenne has no survivors its victims do not generate stories with such happy endings and so they are largely ignored by the media.
Although steroids are given to Duchenne sufferers which can help keep them ambulant for longer, there is currently no cure for the disease. Nevertheless, Alex decided not to give up, and set about changing this state of affairs. Therefore he set up Harrison’s Fund, a charity that aims to promote awareness of Duchene Muscular Dystrophy and find an effective treatment and cure. Alex knows that time is short and that within a matter of years his son will be in a wheelchair. “Harrison may not make it past 18,” he tells us, but progress is slowly being made in the search for a cure. Harrison’s Fund has joined forces with other charities that are raising funds and they are now jointly funding research to find a cure for Duchenne. The cooperating charities are called “The Duchene Alliance” www.duchennealliance.org and they have the same aim: that of saving children’s lives.
Although there are no survival stories just yet, there was recently a breakthrough in research which may eventually lead to the prolongation of life for children with Duchenne. “Exon Skipping” is a process which fixes the DNA of a child with Duchene to make it a less severe form of the disease. Harrison’s Fund is one of the first Duchene Charities to commit all of its income to research of this kind.
If you want to help Alex to ‘Make Time’ for his son, please visit his twitter page (@HarrisonsFund) visit the website at http://www.harrisonsfund.org or come up with your own fund-raising ideas for Harrison’s Fund and get in touch at firstname.lastname@example.org