A five-year-old boy from Tamworth, with a rare genetic condition, has received a specialist tricycle from Simon’s Heroes children’s charity, which will allow him to enjoy rides out with his family.
Isaac Clayton has CTNNB1 syndrome, a neurological disorder that causes developmental delays, which affects his speech, mobility and fine motor skills. He also suffers from Hypotonia; which causes some areas of his body to be quite floppy particularly his truck. He also suffers with tightening of his leg the muscles which causes stiffness and limits his range of movement.
Isaac struggles with walking and standing due to his mixed muscle tone and he often relies on his Kaye Posture Control Walker and wheelchair to get about. His poor balance means that he is unable to ride a standard bicycle, which impacts on his involvement in family activities.
“As a family, we love being outdoors,” his mum Louise explained, “however this has become more difficult as Isaac has grown because he is so dependent on his wheelchair, and we struggle to find outdoor spaces that are entirely suitable for him.
“The trike will give Isaac the independence that he loves. It will also work his leg muscles and help stretch them. The trike has extra features to ensure he sits up straight which will help manage his Hypotonia. It also ensures his legs are in the correct position and allows him to wear his orthotic boots while riding. We can also flick it to parent push mode so when he becomes too tired he can still enjoy the ride!”
Isaac attends St Leonard’s Primary School in Wigginton, where he enjoys music and reading sessions, and is supported one day a week at NICE, a centre for conductive education in Birmingham, which specialises in education and rehabilitation for people with neurological movement disorders.
Isaac lives with his mum, dad Andy and big sister Isabelle (12) who are all dedicated to his cause.
“Isabelle is amazing with him and encourages him to sit correctly and helps him to complete his physio and speech therapy exercises. She happily plays with him and endures his constant demand for Peppa Pig, CoComelon and Frozen on the TV! Isaac couldn’t ask for a better big sister. Isaac has even inspired her to become a physio when she grows up!
“The trike will be a huge benefit to Isaac and will give him a way of getting out in the fresh air without him being in his wheelchair. It will really boost his confidence too. We are looking forward to spending more time outdoors as a family. Isabelle is so excited to go on a first bike ride with him hitched up to his dad! Thank you Simon’s Heroes for your generous gift, it means so much and will make such a difference.”
Author: C Abbott.