Friday, 21 June 2024
UK Charity Week 2024 - Sponsored by Sinclair Method UK
Friday, 21 June 2024

Children’s hospice urges support for families like Toby’s this Christmas

THIS Christmas, local children’s hospice charity Shooting Star Children’s Hospices is asking you to be a memory maker and help families, like Toby’s, make every moment count.

A devastating diagnosis last Christmas changed life forever for Toby and his family. Mum Fleur explains:

“Our family, especially our three wonderful children, Henry, 11, Toby, eight and Olly seven, have always loved Christmas traditions and making magical memories together. Now memory making is even more important to us because we know those precious memories will one day be all we have.

“In November last year, our world was turned upside down when Toby was diagnosed with adrenoleukodystrophy (ALD), a rare brain disease that irreversibly damages the brain and spinal cord. During what should have been a time of joy, we were told that our happy and bright little boy would become totally dependent on us and would die from the condition. It was devastating. Not just for Toby, Matthew and me, but for Henry and Olly – no child should have to hear that their brother is going to die.

“Having Christmas around the corner was a real struggle. It was a time of immense sadness; I would just walk into Toby’s room and burst into tears because I knew that one day I would go in and my clever little boy wouldn’t be there. But this Christmas we have Shooting Star Children’s Hospices by our side. Without them, I honestly think we’d be lost.”

Toby’s family are determined to make lasting memories this Christmas with the help of Shooting Star. Fleur said:

“Making precious memories this Christmas will be so important. Toby, Henry and Olly are excited to meet Father Christmas at the hospice – we all feel safe and supported there which is wonderful.

“Unfortunately, Toby is deteriorating very quickly. We don’t think it will be long before he’s in a vegetative state so we want to make sure this Christmas is really special. We want to fill it with memories that we can hold on to and cherish when the worst happens. We’re so grateful to Shooting Star for helping us to do just that.”

This Christmas, you can be a memory maker for families like Toby’s. Find out how at

For further information, spokespeople or high-resolution images please contact Aimee Royle at or 07794 074732.


Join our FREE mailing list and receive our Weekly Digest bulletin and other updates direct to your inbox.

Related News

Skip to content