Toby’s Story supported by Shooting Star Children’s Hospices

“Last Christmas was a time of immense sadness. This year, we have Shooting Star Children’s Hospices by our side.”

Toby is supported by Shooting Star Children’s Hospices. His mum, Fleur, wanted to share the incredible difference Shooting Star has made to their family.

“My name’s Fleur and I’m mum to three wonderful children – Henry, 11, Toby, eight and Olly seven. Our family have always loved Christmas, we wear matching pyjamas and get so excited. We love all the traditions and making magical memories together. But making memories is now 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 causes neurological damage to both the spinal cord functions and to the brain itself. During what should’ve been a time of joy and happiness, we were being 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. He once told me that the sky wasn’t actually blue, the sky 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.

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. Your kind support can help families like mine to have a truly magical Christmas.

Even though the memory of Toby being diagnosed last Christmas is still so raw, this year we’re stronger and that’s thanks to Shooting Star. There’s nowhere else we can grieve so openly, for the son we will one day have to say goodbye to and for the life he could’ve had.

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 they worst happens. We’re so grateful to Shooting Star for helping us to do just that.”