Thrill-seeking Tanya takes the leap for Alex's Wish
Daredevil Tanya Hogan is getting ready to throw herself out of a plane for her very first skydive in March. Her hair-raising antics will raise life-saving funds for Alex’s Wish - a charity set up by Emma and Andy Hallam to find a cure for their eight-year old son’s terminal illness.
Two boys die of Duchenne every week
In 2010 the Hallam family found their lives turned upside down when Alex was diagnosed with a terminal disease called Duchenne Muscular Dystrophy (DMD).
Duchenne is one of the most common fatal genetic disorders diagnosed in children, affecting mainly boys.
It is caused by a fault in the dystrophin gene - a protein that is necessary for muscle strength and function.
Without this gene, every single skeletal muscle deteriorates as muscle fibres break down and are replaced by fibrous fatty tissue.
For Alex, the effects have been devastating. Wheelchair bound by 12 and paralysed by his mid teens. Alex will suffer respiratory or heart failure by his late teens that will ultimately lead to a premature death.
Cutting dreams short
The disease has a 100 per cent fatality rate and, tragically, most boys will not live beyond their teenage years.
Emma recalls: “We went through a phase of mourning what we had hoped for with Alex, all the usual things like sending him off on his merry way to university, enjoying sports, leaving home and living an independent life. What we were then faced with were questions such as ‘how are we going to cope as a family?’ And ‘how will Alex cope with the condition and not being able to do things he really enjoys?”.
Delaying the symptoms of Duchenne
The charity’s goal over the next ten years is to raise £1m. This means Alex’s Wish can fund clinical trials, bringing new, effective treatments that help delay symptoms.
Of equal importance is the charity’s mission to raise awareness about Duchenne and campaign for new innovative treatments to be brought to market quickly.
Emma explains why lobbying is crucial: “It’s very difficult for rare diseases as there isn’t the volume of numbers which make trials very hard to substantiate. The biggest challenge is to gain support from the NHS England to fund the new drugs when it only affects a few people.”
Every single penny goes to fighting Duchenne
Emma says: “We chose MyDonate because it’s free so every single penny our supporters raise goes direct to the cause. We feel this is important to people.”
Speaking ahead of her skydive Tanya said: “The fundraising skydive was suggested by a colleague and I was hesitant at first. But it is something that is once-in-a-lifetime and after encouragement from friends and family I thought I’d go for it!”