“Tom is really funny and very brave and wants to be involved in everything that’s going on." explains his mum, Maria. "In his imaginary play he’s not disabled – he’s a fireman or an astronaut. He is a happy, determined little boy."
It was just before his first birthday when Tom was diagnosed with quadriplegic cerebral palsy – a severe physical disability that means both sides of his brain, which control his arms and legs, are affected.
We were heartbroken
Discovering that their baby son would face a lifetime of disability was heartbreaking for parents, Maria and Terry: “My knees went. I never want to experience distress like it again” Maria recalls.
They were told it was unlikely that Tom would ever walk, may develop vision problems, and might also be affected by epilepsy – but they weren’t really sure what the future would hold for their baby boy as the severity of symptoms associated with cerebral palsy varies greatly from one child to another.
Life can be challenging
Tom is now six years old and everyday life is challenging. He finds it extremely hard to control his arms and legs, has a lack of balance and suffers from muscle stiffness and weakness. He uses a wheelchair as it seems unlikely that he will ever be able to walk unaided – even using a special walker that fully supports his body, he finds it difficult to move very far. Everyday activities such as eating and playing with toys are also challenging and he has developed epilepsy.
He will undoubtedly need care throughout his life.
Vital medical research
“We adore Tom just exactly as he is. But anything that helps improve outcomes for children with cerebral palsy, and helps parents make the right decisions for their children, has got to be a really positive thing” explains Maria.