The Underwood's

I'm taking part in RBC Race for the Kids

When Brett was two and a half years old, he kept spiking a temperature at night, returning to normal during the day. We were worried so took him to hospital where repeated blood tests over time revealed slightly increased levels of the alanine transaminase (ALT) enzyme and subsequently higher level of a muscle enzyme. Brett was referred to The Evelina Children’s Hospital where he was diagnosed at the age of five with a rare genetic muscle condition.
It was an extremely scary time as it took a while to establish what was going on whilst hearing it could be his kidneys or other rare and serious conditions. We spent a lot of time in and out of hospital for blood tests and were referred to Great Ormond Street Hospital (GOSH) where there was a specialist in his group of conditions. His condition is extremely rare and only 1 in 50,000 have it.
“Brett started treatment and infusions every two weeks at GOSH to proactively try and prevent damage to his muscles. It meant extremely long days, with us leaving the house at around 6am to get to GOSH for 9am and not leaving until 11pm at night. We were juggling school and also having a Brett’s sister Ella, who was only young at the time.
Brett often found treatment very distressing and we’d had a particularly difficult time, with him getting very upset and his sister Ella getting scared by what was happening. Spread a Smile knocked on our door and helped to distract them both from what was happening. They sang and did some magic and made little bracelets with the children. The mood lifted and it was such a relief.
Brett also added his thoughts, saying, “I have a rare muscle condition, and I am really flexible. Spread a Smile are always there when you need them. When I was in hospital at first and I was scared, Spread a Smile walked in and cheered me up.”
Brett also shared more about his homecare treatment saying, “I have an assistance dog called Eevee and she helps me when I need my medicine. I put one hand on Eevee and she lays on my lap and I cover my eyes and countdown from five. I love taking Eevee for walks and whenever I need her I give her a cuddle and she helps make me feel better.
“When I was little, I had to have lots of blood tests in my hand which were painful. Now I have homecare I don’t have the medicine trolley and can wear my backpack and play just like other children.
“Brett’s diagnosis comes with some challenges on what he can do physically, but through the guitar he has found confidence and a passion for something he’s good at. He says it makes him unique and he really is an incredible young man.
We have spent some very difficult times at Gosh hospital and all staff have always been so supportive to us as a family and to Brett. Visits to hospital are never what you want as a child but Gosh have always made it so much better of an experience for our family.
Brett was inspired by another close friend to complete a charity run and he wanted to do it for Gosh knowing how much they have supported him and other children. This run will not be easy for Brett due to his condition but he is determined and we are super proud of him for this. We have chosen to all do it as a family to support him.