How would you feel if you were told that your child or loved one was seriously ill?
What if doctors told you that their medical condition was incurable?
…And rare?
…And that there were few effective treatments or cures available – perhaps none at all?
How would you feel?
It is undoubtedly a nightmare scenario for all of us, but for some it is also a reality.
Alex Smith, CEO of the charity Harrison’s Fund, describes the moment his son was diagnosed with a rare and life-limiting condition.
“When Harrison was just 4 years old, I took him to his paediatrician thinking he might have a mild physical delay and may need physical therapy,” Alex explains. “Within 2 weeks, a blood test and a visit with a neurologist provided us with the most devastating diagnosis imaginable.”
Harrison was diagnosed with Duchenne muscular dystrophy in January 2011. It affects every muscle in the body, causing them to slowly deteriorate. Roughly 1 in every 3,500 boys are born with Duchenne and tragically, they will only live until their late teens or early twenties.
“The neurologist explained to us that Harrison’s muscles would rapidly deteriorate, he would lose the ability to walk, to use his arms, to bathe himself, to go to the bathroom on his own. Eventually Duchenne would attack his heart and lungs and the disease would take his life. ‘We have nothing to stop it,’ he told us. ‘It’s 100% fatal. I wish I could tell you it was cancer’.”
The Saatchi Medical Innovation Bill aims to offer hope to people like Harrison and their families by allowing doctors more freedom to discover new ways to treat rare conditions. The team behind the Bill, led by Lord Maurice Saatchi, are working hard to change medical history and have recently launched a petition to help people have their voice heard and ultimately play a part in bringing this Bill into law.
Support for the Bill is gathering pace – the petition had nearly 5,000 signatures in its first week – and even the health secretary, Jeremy Hunt, has said that “the government should do whatever is needed to remove barriers that prevent innovation which can save and improve lives”.
However, the government will only take this Bill forward if enough people back it. A public consultation on the proposals will end on April 25th so there’s only a limited amount of time left to have your say.
If you would like to get involved, you can do so by:
- Signing the petition to show your support.
- Responding directly to the public consultation.
- Tweeting, liking and sharing posts from the Saatchi Medical Innovation Bill blog.
- Watching and sharing this video of Alex explaining why he believes the Saatchi Medical Innovation Bill is so important.
Alex is supporting the Bill because, as he says: “I don’t want Harrison and other patients to be just the next generation to die. I want them to be the first generation to survive.”
How about you?
