Little Kerr Hunter was diagnosed with Duchenne Muscular Dystrophy just before Christmas 2015 at the age of three.
His parents, Alyson and Alistair, noticed their toddler was struggling to get up an down the stairs and, if he was sitting, could not get up normally.
After raising their concerns with the health visitor, Kerr was referred to a paediatrician for tests – and the devastating truth was revealed just a few days later.
The condition causes muscles to weaken and waste over time and currently few people suffering from it reach the age of 30.
Mum and dad were understandably shocked by the news – but very quickly adopted a positive attitude to not only make sure their wee boy receives all the love and attention they can give him, but also raise money for vital research.
Last year they launched the Defeating Duchenne – Kerr’s Cause campaign and were able to give the Muscular Dystrophy UK charity’s Duchenne Research Breakthrough Fund over £21,000.
Earlier this year the family, from Roselea Drive in Brightons, and their friends kept the momentum going by climbing Ben Nevis. The group of 34, which included Kerr’s big brother Aaron (8) and six other children aged under 11, all reached the top and were able to donate another £3000 plus from their sponsors as a result.
Alyson (33), a dental receptionist, said: “The paediatrician originally diagnosed hypermobility, but did some blood tests to rule out anything more serious. He said we’d only hear back if anything showed up so, when we got the call a few days later, we knew it wasn’t going to be good news.
“It was difficult knowing Kerr was unlikely to lead an independent life, but we are a very close family with very positive attitudes and are determined to take each day as it comes. Our family and friends have been a fantastic support.
“At the moment Kerr is being treated with steroids which help, however there is research and clinical trials going on we hope could lead to effective treatment for Kerr and others in the future.”