Dad’s fundraising efforts for youngster with DMD

A father who is determined to help his son “live life to the max” has been taking part in a number of difficult fundraising challenges in his efforts to raise money for research into Duchenne muscular dystrophy (DMD).

Alexis Ellison, Cambridge, has been pushing himself to take part in half-marathons, skydives, cycling challenges and more all in hope of helping his son, Samson, to lead a fuller life.

Young Samson, who is just six-years-old, is living with incurable DMD and is losing muscle strength by the day.

Having been diagnosed with the condition at three, his parents are growing increasingly worried about his future, as DMD typically shortens life expectancy as the condition worsens.

“When your child is diagnosed with a life-limiting condition which has no cure it’s absolutely devastating,” Alexis said.

“He’s the happiest, kindest little boy and to look at him and know you’re going to outlive your son, to have that emotional baggage every day is absolutely devastating.”

In most instances, people living with DMD will lose the ability to walk in their early teens and be unlikely to survive past their late twenties, Alexis and his wife Lynette have been warned.

“There’s medication in place to manage it… But nothing to fundamentally cure it,” Alexis said.

In a bid to help his son “live life to the max,” Alexis has been jumping head first into several charity challenges in recent years and has managed to raise an impressive £4,000.

Later this month, he will take part in a 100km night-time cycling event in London, before eyeing up a second cycle challenge due to take place on 30 June.

Enviva Paediatric Care provides nurse-managed homecare for babies, children and young people. To find out more about our services, contact us today.     

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