Story
In September 2017, not long after his third birthday, it was confirmed by Doctor Kulshrestha and her team at the Robert Jones and Agnes Hunt Orthopaedic Hospital that Ruairi had Duchenne muscular dystrophy a severe and life limiting muscle-wasting condition.
While Tim, Ruairis father, had concerns over Ruairis movements but passed it over on the thinking that all kids develop differently never did the family expect to be hit with the news their son had Duchenne muscular dystrophy.
Ruairi, who has a younger sister Ayla, loves to ride his bike, which he recently learnt to do without stabilisers on flat ground. Ruairi finds it easier to go further on a bike than walking.
He also loves to draw and colour and at both school and home likes reading stories.
While Ruairi loves to do all things young boys do at his age, he also has to deal with things children of his age dont normally contend with, such as hydrotherapy sessions at RJAH hospital, taking steroids on a regular basis and having specialist physiotherapy.
Ruairi is also on a drugs trial named Polaris DMD, which is accessing potential alternatives to steroids and entails Ruairi attending Manchester Childrens Hospital every 3 months for check-ups.
The family want to make every day count for Ruairi and others living with Duchenne muscular dystrophy through the work of Muscular Dystrophy UK.
Please join us and Hope For Ruairi in helping raise awareness and vital funds to put an end to Duchenne muscular dystrophy.
Net proceeds from this event will be split 80/20% between MDUK's research into Duchenne muscular dystrophy and help support Ruairi with future welfare needs