Brett
https://spreadasmile.org/wp-content/uploads/2025/02/C193-Brett-800x530-1.png 800 530 Susie Susie https://secure.gravatar.com/avatar/da2c27e77088cd3c01a99178306ac68f?s=96&d=mm&r=gWhen Brett was two and a half years old, he kept spiking a temperature at night, returning to normal during the day. His parents 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 muscle condition which causes hypermobile and increased limb rotation.
Mum Victoria said, “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.
“We first met Spread a Smile on one of these visits to GOSH and it couldn’t have been at a better 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. Then 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.”
Mum Victoria continued, “From then we would see the Spread a Smile entertainers every time we were in hospital and got to know them quite well. They always helped to bring some fun and distraction to our visits. If I had to stay with Brett during treatment whilst he was getting upset, Spread a Smile would do a virtual session with Ella in another room and it was amazing that she had something fun and positive to do.”
“In February 2024, Brett started homecare treatment meaning he don’t have to go to hospital so regularly which is brilliant. But the downside is that we don’t get to see Spread a Smile! I wanted to do something just for Brett so I reached out to them to ask about guitar lessons. He already had a guitar and he now has virtual lessons with Al or Cassie from Spread a Smile every two weeks. They are absolutely fantastic and Brett loves them. They give him something to look forward to and focus on and a break for me at the same time.
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. I love learning to play the guitar with Spread a Smile.”
Spread a Smile has also supported Brett and his family through our family events and outings with Victoria saying, “We’ve also gone to some brilliant Spread a Smile family events such as an Everyman Cinema trip, a LEGO event and their winter Party. It’s been great for us to do something as a family and for Brett to meet and see other children life him who are having home treatment. At the last Winter Party he saw another child with a medication backpack saying, ‘Look Mummy, another child like me.
“I’ve been able to speak to other parents at the events who can empathise with what we’re going through and I met a Mum who also had a young baby when their other child had been diagnosed. We talked about having to juggle roles as a Mummy to a young baby and as a medical parent to the other child and it was so comforting to share our experiences.
“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.
“For Rare Disease Day on 28 February, Brett’s school are celebrating and fundraising for Spread a Smile. All of the children will dress up in the colours of Spread a Smile and donate to help other unwell children. It’ll be a really special day and I’m so proud of Brett and everything he does.”
Brett added, “Spread a Smile make me smile, like at the Winter Party. Whenever I am with them, they make me happy.”
Please help ensure we can continue to support children and young people like Brett and their families by donating today. Thank you.