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taken himmultiple times to GPs about their concerns but was always told he was fine and will get there. They were informed that although he was slow meeting milestones as a baby, he was still within the “normal” range. But Monique and partner Jason, still knew something wasn’t quite right. Aside from working with their GP, they had an appointment with a paediatrician for suspected ADHD or Autism for Noah. “One of the first questions that was asked was what my main concern was – so I said, his motor skills”, recalls Monique. “The pediatrician then asked if Noah was able to do a blood test to check his creatine kinase (CK) levels. They were extremely elevated and so they wanted us to get Tommy’s bloods done and come back in for further testing as I was also 17 weeks pregnant at the time. That’s when ‘muscular dystrophy’was mentioned”. “When we went in for the appointment with the maternity unit, we found out that Tommy’s CK levels were also extremely elevated and received the devastating news that both Noah and Tommy have Duchenne muscular dystrophy”. “At this appointment we found out that I was carrying a When you meet these lovely brothers, Noah (7) and Tommy (2), for the first time you instantly warm to them because their smiles light up the room. They both have the same cheeky personalities, are the best of friends and are always looking out for one another. Noah loves to know everything and anything and is not afraid to ask questions. Nor is he afraid to tell you if you are not being kind! They also have Duchenne muscular dystrophy – a progressive muscle disease that affects approximately one out of every 3,600 baby boys born. Duchenne muscular dystrophy is a genetic disorder characterised by the progressive loss of muscle. It affects many parts of the body, which results in deterioration of the skeletal, heart, and lung muscles. Until relatively recently, boys with DMD usually did not survive much beyond their teen years. Thanks to advances in cardiac and respiratory care, life expectancy is increasing and survival into the early 30s is becoming more common. Noah always struggled keeping up with his peers and couldn’t run or jump very well. Mother, Monique, had READY, SET, ROLL! Continued over ... Photos by Gemma Foulds. SPRING 2023 InTouch | 9