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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 don’t 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.

Net proceeds from Hope for Ruairi will be split with 80% of the funds will go towards research, and the remaining 20% held in trust for Ruairi’s future care needs, which will become extensive as he grows older.

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