*** Update ***
We’d like to say a huge thank you to everyone who donated to Caitlin’s appeal. She’s now met her fundraising target for an adapted trike!
On behalf of Caitlin, her mum, Amelia and everyone at Children Today we want to say a massive thank you to those who shared and donated. Thanks to your generosity she’ll be whizzing down the Millennium coastal to visit her Granny very soon and getting the daily exercise she so desperately needs!
Caitlin 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.
Through pledges from Children Today and another charity, as well as fundraising events Caitlin has already secured more than three quarters of the cost of the trike, but she still needs to raise a further £300 (amount updated 23/09/22) to get this much-needed equipment.
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.
“She’s on a really strict calorie controlled diet to try and manage the weight gain but she desperately needs to be able to get regular exercise as well.”
Caitlin recently trialled an adapted Tomcat trike at school and was able to cycle for the first time.
“I couldn’t believe it when she was able to pedal by herself. She was so proud of herself and so was I. Her little face lit up! She thought it was hers to keep, though, and it broke my heart to have to tell her it was just to borrow.
“She’s asked me every day since when she can have her own trike and keeps telling me she can’t wait to cycle to Granny’s house, up the Millennium coastal path, when she gets it. I just want this for her so much. It’s awful not being able to give your child the one thing that will make them happy.”
Friends and family are planning to take on fundraising challenges including a skydive in August and they are also organising some fundraising events, including a charity curry night.
To make a donation to help Caitlin get this vital adapted trike click below!
Any funds raised over and above what we need to provide this equipment will go towards helping fund vitally important equipment for other children and young adults with a disability or life-limiting condition.