IMAGINE you were given the news your seemingly healthy two-year-old child had a fatal disease that would see their muscles begin to waste away over the coming years until they were left unable to walk, move or live.
By their early teens they would likely be forced to use a wheelchair and by their mid-twenties they would most likely be dead. There is no medically proven cure and the NHS isn’t able to provide much help. How would you react to this news?
Faced with just this earth-shattering prognosis, one couple from Nailsworth have shown incredible resilience, fight and perseverance and have between them raised more than £250,000 to find a cure.
These inspirational parents are Alasdair Robertson and Robyn Pete whose five-year-old son Felix was diagnosed with Duchenne muscular dystrophy – a rare and progressive genetic condition which effects mostly boys.
Like many others in the UK, the couple are refusing to take no for an answer and have channelled all their efforts into supporting a worldwide movement working desperately to find treatments and a cure.
Since Felix’s diagnosis, Alasdair, who aged 18 was the captain of the England national rugby team, has taken part in long-distance cycling fundraisers from John O’Groats to London to Paris and this year, London to Paris to Monaco – with the aim to raise a quarter of a million pounds for their chosen charity Duchenne UK.
Meanwhile, his wife Robyn, an award-winning feature film-maker, has been shooting a documentary following the amazing story of this group of parent’s fight to save their children from an early death.
Over the last year she has been travelling to conferences, charity hubs and research centres and speaking to affected parents and clinicians to document the front line of the race against time to successfully develop a clinically-proven drug that will help all those affected.
“In a very short space of time our son went from being a seemingly healthy boy to having a death sentence,” she said. “Being told something like that turns the world on its head.
“The condition has quite grim prognosis. Imagine the muscles in the body rubbing against each other like sandpaper and slowly disintegrating. If no cure is found this means Felix will most likely lose the ability to walk by the age of 12.
“The only option available at the moment is for him to take steroids every day. These come with some serious physical and psychological side effects: his growth will be stunted, his bones will become brittle and his personality has already become very volatile. But he may walk longer. Maybe one or two years longer. We need that time, because his diagnosis is fatal.
Alasdair added: “At the time doctors told us there was nothing we could do to help our child. We did some research and found out there was a movement happening all over the world of parents who chose to fight for their children. Over the last few years they have altered the landscape beyond recognition.
“Since Felix’s diagnosis we have met parents who have started biotechs, become scientists and raised armies. Because of them, this disease may well be cured in the next five years.
“If Felix survives this disease, it will be because of parents who went to war. And it will go down in history. Sadly, the efforts of many have come too late for their own children. The urgency now is to save this generation. Our son included.”
Although two boys a week are born with Duchenne MD in the UK, it is still classed as a rare condition and therefore receives little funding for clinical trials or research purposes. This has left the responsibility on parents to team up with drug companies and scientists to try and develop a cure themselves.
In the last few years millions of pounds have been raised to fund trials. While the first phases have enjoyed some success, no drug is yet fully tested or available for all sufferers. And with life expectancy now around 25, time is running out to save the current generation.
Robyn continued: “It looks now they are hopefully coming close to finding a cure. The dedication and incredible efforts that parents have made has been remarkable. I’ve met people who have given up their jobs and their lives to concentrate on this fight.
“I’ve seen clearly how far that parental instinct can go, and how much parents will fight to protect their children. When this battle is won – and it will be won - I want this documentary to tell the story of these amazing parents who refused to take no for an answer.”
During the process of making her documentary Robyn has spoken at gala dinners, fundraisers and has travelled as far as Boston and Washington in the USA to attend an FDA hearing and visit the companies at the forefront of Duchenne drug development.