Inspired by his friend Phoebe, who lives with Facioscapulohumeral muscular dystrophy (FSHD), eight-year-old Lenny decided to take on a cycling challenge to raise money for us. On 12 September, he cycled 16 miles and raised over £2,500. His mum Stephanie tells us why he wanted to do something to make a difference.
“He just wants to make a difference for his friend”: Lenny’s cycle for Phenomenal Phoebe
Phoebe’s mum Vanessa is my best friend, so Lenny and Phoebe have grown up together. When Phoebe was five, she was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD), and over the years Lenny has seen the changes she’s gone through.
As they’ve known each other since they were very small, he can see how her FSHD affects her. It’s causing progressive muscle weakness, but although she can’t physically smile, her family describe her as ‘the happiest little girl, always up for fun’ – and that’s so true.
Lenny has never raised money for charity before, but he was determined to do something for Muscular Dystrophy UK in Phoebe’s name to help make a difference – to help Phoebe and others living with a muscle wasting condition.
He’s always out and about on his bike, so chose to do a sponsored cycle.
Despite some windy conditions on the day, Lenny successfully cycled the planned 16-mile circular route from our home in Shetland and was joined by some school friends for the final part of the ride. Phoebe was at the finish to greet him.
He was so excited when he saw that he’d raised £1,800 on his fundraising page, as he’d originally set himself a target of £150. We’re so proud of him and seeing him with Phoebe at the finishing point, you could see on his face just how proud he was to have done it for her.
“I just really want to show Phoebe how much I care about her and that anyone can raise money when they really want to help.”
Lenny, age 8
The money Lenny has raised will go to the Phenomenal Phoebe Family Fund, with 80% going towards research into FSHD and 20% to help support Phoebe’s future welfare needs.
Support Lenny's fundraising
By supporting Lenny’s efforts, you’ll be contributing to research for individuals like Phoebe living with FSHD.
Inspired by this story?
There are many ways you can fundraise for people living with a muscle wasting condition. No idea is too big or too small.
