Gwen’s Story

From the very start of her life, Gwen faced more than most – spending her first 10 months in hospital.

“Gwen was born at 36 weeks with spina bifida and other complications. At just two weeks old, she was diagnosed with vocal cord palsy and an unsafe swallow, which meant she needed a tracheostomy,” explains mum, Jenny.

“This was a massive shock to both Matt, Gwen’s dad, and me, especially with the level of care required. At nine months old, a hospital nurse suggested Shooting Star Children’s Hospices – they could see we were really struggling.

“The minute she said the word ‘hospice’, you think that’s where people go to die. But after learning more about what Shooting Star offers, we agreed to being referred and visited Shooting Star House in Hampton. From that moment, I feel our lives changed in a positive way.

“You can’t explain the feeling when you walk into Shooting Star – it’s like everything’s been lifted off your shoulders. Gwen comes for respite, symptom stays, day trips and events. She loves it and never wants to leave! Gwen goes to a mainstream school, so being around peers with different disabilities helps her see she’s not alone in the world.

“Shooting Star’s motto is ‘make every moment count’ – and they really do. Everyone credits the family for who Gwen is, but I think Shooting Star contributes a lot to that. There are no stresses of the everyday there, she can just be Gwen.”

The family have enjoyed many events over the festive period, “We love going ice skating every year at Hampton Court. It’s so nice getting Gwen on the ice and seeing her have fun, along with other supported children. It’s so magical. And of course, nothing beats meeting Father Christmas when he stops at Shooting Star House.”

Gwen’s condition means she’s never been able to walk and is fully reliant on a wheelchair. Jen and Matt worked hard to ensure she felt confident using one early on.

“Her journey started with a little red chair called a Zip Zac. We sat her in it, let go and she just got it. Through a colleague, I found a wheelchair racing club called Velocity Racers. She’s the youngest by seven years, but they took her under their wing.

“Last year, she raced her first event, Vitality Westminster One Mile. She was the youngest by far and, although anxious, in true Gwen style, she smiled, waved and finished. Her second race was the Brighton Mile – she raised £1,000 for Shooting Star and knocked 31 seconds off her time.”

“As a family we’ve completed various fundraising events for Shooting Star, and no matter what we do or how much we raise, it will never be enough to say thank you. That’s why we do it, because I’m forever grateful for what Shooting Star have done for Gwen, for me, and for us as a family.”