Grace, who's living with Pitt-Hopkins syndrome, wishes for a trike to explore the outdoors. We were asking for an offer of a trike for Grace's wish but we did not receive an offer that would be right for Grace, therefore we are now hoping to fully fundraising her wish. Can you donate and help make Grace's wish come true?
Seventeen-year-old Grace lives in Somerset with her parents. She has a neurological disease called Pitt-Hopkins.
For Grace, her illness combines severe learning disabilities and dangerous epileptic seizures which come in many varieties with a range of triggers, such as hormones, weight gain or heat – sometimes Grace drops to the floor with no warning, at her 5’7” stature, she runs the risk of fracturing her skull with each fall.
An independent spirit
Mum Lynda says, “Grace is a happy, mischievous character. Her mental age is similar to that of a toddler and she is non-verbal because of the brain damage caused by her seizures, but she is very independent of spirit, she enjoys life, can eat, drink, laugh and walk around.
"She is very affectionate and socially expressive. She loves school and exploring outdoors.
"When our local hospice suggested we apply for a wish for Grace, we wanted to choose a wish that would enrich her experience.
"We tried out a trike at the hospice and Grace loved riding in it, so that’s what we chose for Grace. Because of the way her epilepsy compromises her stability, an adapted bike would need to have a wheelchair on the front so the rider can keep an eye on Grace."
A breath of fresh air
"Rather than pushing her wheelchair, we could take the trike into town or to the park together. It’ll give her a sense of freedom that she’s never had before, which is really exciting for us.
"We have lots of lovely flat cycle paths where we live, so it’ll be wonderful for Grace to explore in the fresh air and give her respite from the pain, trauma and medication she deals with on a daily basis."
We’re always on edge
It has been a long and difficult road of genetic testing since the age of five to get Grace’s diagnosis, but she didn’t have her first seizure until the age of 12. She is admitted to hospital frequently, and gets upset about being there.
Mum Lynda says, “We are always on edge as listening out for Grace’s seizures is a 24/7 job. Grace’s condition is rare but we know we are not alone and connecting with other families has been so helpful. Everything is that little bit harder for our family, we have to fight for each other, but the most important thing is that Grace knows she is loved.”
You can sponsor Grace's wish for a trike - help her enjoy the freedom and joy that childhood should be filled with today.