Archie and Jensen Kynaston, along with their family, are championing awareness of a rare muscle disease.
"Eventually the boys will stop walking and there are breathing machines as their condition deteriorates."Archie is 14 and walking so much … usually they're in wheelchairs by now."
The 14-year-old said the idea of being in a wheelchair was second nature, and although it scared him sometimes, he said that was not a bad thing."When he got diagnosed, the first thing he asked that day was, 'Will I have to be in a wheelchair?'Chris Brigg said many members of their family, distinguished by their bright yellow shirts, would be running in events on Sunday.However, those plans were put on hold due to COVID-19.
"We ran on the weekend and someone yelled out Archie's name as we went past so he must have a few followers."Mr Brigg said he watched the news for trials underway in other countries, and hoped one day the same opportunities would be available for Archie and Jensen. "He may never run a marathon but hopefully with advances in medicine he'll have a bright future and brighter than some of the ones in the past."The family runs a charity to support the boys to live with the disease, whether to help with medical expenses or modifications to their home or car.Money raised through Our Superhero Boys helped purchase the stroller."It takes so long to claim stuff and by the time you claim it and they approve it, you still haven't ordered it.
"Life is so busy … we don't dwell on it too much but every now and then something will happen and we will remember all that is coming."
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