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Toby with his siblings last Chrsitmas

"Last Christmas was a time of immense sadness. This year, we have Shooting Star by our side."

Help families like Toby's make every moment count

could pay for a visit to our Santa’s grotto so children like Toby can meet Father Christmas in a safe environment.


Fleur – Toby's Mum

“Our family, especially our three wonderful children, Henry, Toby and Olly, 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’ve been a time of joy, we were told that our happy and bright little boy would become totally dependant 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.”

"Without them I honestly think we would be lost."

Toby’s mum Fleur talks about how devastating the family found Toby’s prognosis, how they resolved to make as many memories as they could after Christmas and how Shooting Star is supporting them as Toby’s condition progresses.

Your donation will support families like Toby's

Our grotto at the hospice

Visit to our Santa’s grotto

This way to north pole sign

Christmas lunch at our hospice

Counselling session in one of our counselling rooms at Shooting Star House

Specialist counselling session


“Toby loves science. He once told me that the sky wasn’t actually blue, it was grey and it had particles in it that reflected the light and made it look blue, and I remember just standing there looking at him and thinking ‘wow, you’re incredible’ – the thought that one day Toby wouldn’t be here being his brilliant self was incredibly tough. It’s still tough. But this Christmas we have Shooting Star Children’s Hospices by our side. Without them I honestly think we would be lost. Not only have Shooting Star been helping Toby, thanks to the incredible support they offer to siblings, Henry and Olly have been looked after too. They’ve visited the hospice to have fun in the pool, the sensory room and in the soft play. Henry has also been having art therapy once a week which has made such a difference, and Olly has started music therapy.”

The difference we made in 2023/24


Children and young people with life-limiting conditions supported.


Bereaved families accessed our specialist bereavement care.


Care nights were provided.


Face-to-face and telephone contacts were made to families by our Family Support team, community nurses and SPACE team.