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Toby’s story

March 15, 2024

In the weeks leading up to Christmas in 2022, a devastating diagnosis changed life forever for Toby and his family. At the age of eight, doctors discovered Toby had 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,” Toby’s mum, Fleur said. 

“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.” 

Toby was diagnosed after his mobility started to fail. Within the space of a year, he had gone from walking, to being in a wheelchair. He has also lost his speech, swallow, continence and is having numerous absent seizures in a day.  

“Having the diagnosis was a shock that I don’t think you can ever be prepared for. 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.” 

Fleur and her husband, Matthew, wanted to ensure their family had the wrap around support they needed and contacted Shooting Star Children’s Hospices, knowing they could all benefit from many of the bespoke and tailored services the charity provides.  

“Coming here has been huge for us. I think the predominant reason was to support our children, but in doing so, we have also met other parents. You’re in the same situation, everyone is in this together,” explains Fleur. 

“It’s very hard to take Toby to a lot of places. That’s why it’s lovely to come here, somewhere you know that you’re going to be in an environment where everyone is there to help you; when you need somebody and a shoulder to cry on or just to get out of the house and have somewhere that is a safe place both emotionally and physically.” 

With the help of Shooting Star, they have created a community of support. Not only for their family of five, but for Fleur’s parents too who have attended Grandparents Days at Christopher’s, our purpose-built hospice in Guildford. These events are an opportunity to meet other Grandparent’s to share experiences and learn from each other.  

“I want to make sure that they also have a network around them. The hospice has been paramount to making sure I feel that they’ve got the support they need as well,” Fleur explains.  

Toby has had numerous sessions in the hydrotherapy pool along with his siblings, who also attend a range of creative therapies including art and music. These offer a safe space for children to find new ways to express themselves.  

“Shooting Star has been amazing,” Fleur said. “They call me all the time. I can send an email and say, ‘this has happened’, and then the phone will ring and I’ll have somebody asking me how I feel about it. ‘Am I okay?’, or I’ll just get a text message to say, ‘just want to check in. Is everything okay’? .  

“Those messages are so important. Firstly, I know there’s someone thinking about us but equally, I know that there’s someone on the end of a phone that if I have a problem, whether that’s with Toby, physically and medically, or it’s emotionally, then I can just ring up and I know somebody will take the time to work it through with me, which I feel incredibly lucky to have.   

“Without Shooting Star, I think we would honestly be a little bit lost,” said Fleur.  

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