THE family of a young lady from Llanelli has launched an appeal to raise funds for a life-changing adapted trike for the 18-year-old, with the help of children’s disability charity, Children Today Charitable Trust.
Caitlin Janes has Prader-Willi syndrome (PWS) – a rare and complex genetic condition that causes a range of physical symptoms, learning difficulties and behavioural challenges.
Prader-Willi syndrome is thought to affect part of the brain called the hypothalamus, which produces hormones and regulates growth and appetite, which may explain why those with Prader-Willi syndrome often experience delayed growth and persistent hunger.
Since childhood, Caitlin, has been desperate to ride a bike, but sadly is unable to due to her condition.
Her mum, Amelia Janes, explains: “Caitlin’s an amazing girl with a heart of gold but she has very complex needs. She has Prader-Willi syndrome, which causes all sort of issues, including a constant desire to eat. Because of the PWS Caitlin doesn’t burn calories or digest food the same way other people do, and she always feels hungry so she’s prone to weight gain.”
Caitlin was also diagnosed with scoliosis, caused by the PWS, in July 2021 and recently had an operation on her spine to try and help correct the curvature.
However, since her surgery Caitlin has struggled with pain management and her leg length discrepancy, caused by the PWS, is now more pronounced meaning walking even short distances can be uncomfortable and painful.
Her mum Amelia says: “Caitlin was always keen to stay very active, but since she’s had the surgery she hasn’t been able to take part in regular exercise, so she’s gained a lot of weight. There’s a lot of pressure on her hips and joints which is causing her a lot of pain. It’s had a huge impact on her mental health as well.