Toby Penrose was a happy, healthy young lad, but in 2015 he was diagnosed with a rare degenerative brain disease that has taken his ability to walk and talk, and even prevents him from knowing he's unwell. But none of that could stop his loving mum Emily from organising an amazing surprise for his birthday featuring not one Ferrari, but nine! Emily Penrose, 47, from Truro, Cornwall shares her story…
My son Toby had always done well in school. But after Christmas in 2014, when he was just 9, something changed. His schoolwork began to suffer, and he found it hard to concentrate on anything for any stretch of time. He was also misbehaving a lot, which was unusual for him.
‘Maybe we should have him tested for ADHD?’ I suggested to my husband Graham, 50. So, our GP referred Toby for a brain scan at Treliske hospital in February last year. We got the results on Friday 13 March. Not a good omen.
‘I’m sorry, but Toby has adrenoleukodystrophy,’ said the doctor.
Also known as ALD, it’s a rare genetic and degenerative brain disease. Though it’s incurable, ALD can be effectively treated if caught before the symptoms begin to show. Unfortunately, Toby was diagnosed too late, so nothing could help him.
‘Toby will gradually lose the ability to walk and talk, before reaching a vegetative state,’ the doctor explained. The condition was terminal.
‘It can’t be true!’ I sobbed.
A parent never expects to outlive their own child. And we couldn’t even explain to Toby why he was ill. One symptom is that, often, the sufferer doesn’t know they’re poorly.
After the diagnosis, we were lost. But the hospital directed us to ALD Life, a charity that helps parents of children suffering from this dreadful condition. With their support, I found the strength to say enough is enough.
‘We should make as many happy family memories as possible,’ I declared.
‘Let’s do it,’ Graham readily agreed.
So we took Toby to see Barcelona FC, through the Make-A-Wish Foundation. We also met his favourite player, Wayne Rooney, and went on the Harry Potter studio tour. But, despite trying to keep positive, it wasn’t always easy. Toby had already begun to slur his words and, by March 2015, he was using a wheelchair, even though he was convinced he could still walk and talk.
With his 11th birthday coming up, I wanted to do something special.
‘What do you want for your birthday?’ I asked him.
‘A Ferrari!’ he replied, excitedly.
Toby loved his sports cars. There had to be something I could do…
I posted a Facebook message: Toby would love to sit in a Ferrari for his birthday. Does anyone know who owns one?
An old school friend saw my post, shared it around and, eventually, it reached the right people. With his help, we managed to get nine Ferrari owners to line up their cars outside The Esplanade Hotel, near our home, on Toby’s birthday.
Our boy had no idea.
‘You’re in for a real treat!’ I promised.
By then he’d lost his ability to speak entirely. But when we arrived, Toby’s face lit up. As I wheeled him along a red carpet that’d been laid out, he gleefully inspected each vehicle. We finally stopped at his favourite, a red Ferrari, and lifted him into the passenger seat.
All of the drivers were so lovely.
‘I can’t believe they’ve all done this for a family they’ve never met!’ I said to Graham.
It meant the world to Toby.
My poor boy continues to degenerate, but he will never be short on love. And we’ve got so many more memories yet to make.
Emily has set up a Facebook page to document Toby’s adventures. Find out more by searching ‘Toby the First Fund’ on Facebook.