Grace's Trike Wish | Make-A-Wish
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Girl
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Wish Child Grace
Grace
Pitt-Hopkins syndrome
I wish for a trike to explore the outdoors

Grace, who's living with Pitt-Hopkins syndrome, wishes for a trike to explore the outdoors. Can you donate a trike to make Grace's wish come true? 

If not, you can still donate towards Grace's wish here. 

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.

Grace with butterfly face paint

"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.

Grace

"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.”

Grace

We need your help! If you, or someone you know, can help to grant Grace’s wish for a specialised trike, with a bike on the rear and a wheelchair on the front, please fill in this form.

If your offer can help make Grace’s One True Wish a reality, we will be in touch within a fortnight. 

You can also sponsor Grace's wish for a trikehelp her enjoy the freedom and joy that childhood should be filled with today.

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Safety equipment £100; Wishgranting costs £124; Total £224

Sponsored donations made towards a child’s wish will go towards their One True Wish. If a child’s wish receives over funding the additional donations will be put towards a similar wish. If a child's wish doesn't reach 100% funding their wish will still take place and general funds will be used.