One day Tommy was playing in his football team, days later he was diagnosed with an incurable bone disease that effects around 1 in 2 million, Polyostotic Fibrous dysplasia.

Very little is known about this rare disease: until November 2024 I’d never heard of it. Then it changed my family’s life forever. And so, I’m on a mission to raise awareness and as much money as possible to fund research that will help those few affected fight this cruel disease.

I'm Sophie, mum of 3 boys. My eldest Louie is 10, and then I have Tommy & John who are 6-year-old twins. All my boys are full of energy, and love all kinds of physical activities, especially football. They keep me on my toes… and I love them for it!

In September 2024, Tommy started to become tired, not wanting to walk very far and complaining of pain in his shin. When I look back his tirdenss and mention of pain went a lot further back. Then when he was called onto the pitch for his first football match, I noticed that he was running with a limp. Over the next 2-3 weeks, Tommy's limp started to become more apparent, and his pain got worse. After a referral for an x-ray, Tommy was rushed to the Royal London Hospital for immediate tests. Following weeks of sheer fear and panic and two MRI's under general anaesthetic his diagnosis was confirmed. Polyostotic Fibrodysplasia.

Tommy needed immediate surgery and was wheelchair bound for 8 weeks, even pre-surgery, this was to prevent his hip and femur from completely shattering.

He had an 11-hour procedure to insert plates and screws (enough to double his body weight!) to support his hip and his femur, he had an incredible team of surgeons that ensured his surgery was a success.

Since then, tests have shown that nearly every bone in the left side of his body is affected by the disease. Tommy has had further MRIs and tests to investigate lesions they have found on his right side.

Due to this disease, he also has a leg length discrepancy, which is now causing him pain in his back, hip and legs when he's walking.

“I’m still standing!”

Tommy is battling something that no little boy should have to, but he’s doing it with an infectious smile, whilst singing the Elton John classic every time he's scared or in pain. I’m filled with an incredible amount of pride and respect for his ability to be positive and adapt to what's happened – his strength inspires me every day.

We don’t know what the future looks like for Tommy, so I need your help.

I’m sharing my family’s story because I need your help to raise awareness and funds so that the doctors doing the incredible work into the research of this cruel disease can continue, and one day find a cure so that no-one else has to go through this.

So please share Tommy's story and if you can, donate. Your help can give those effected by Fibrodysplasia a chance of a different future.

To show my support and raise awareness, I will be completing multiple events in 2025 with Tommy and sharing information and updates on Tommys progress and more about his condition.