“Tom is really funny and very brave and wants to be involved in everything that’s going on. He is a happy, determined little boy,” says his mum Maria.
But sadly, Tom has quadriplegic cerebral palsy: both his arms, both his legs and his torso are affected, and he is severely physically disabled.
Tom was diagnosed before his first birthday and discovering that their baby son would face a lifetime of disability was heartbreaking for Maria and husband Terry. But, Maria says: “As time goes on, the worst case scenario becomes something you can deal with. And we’ll never forget how fortunate we are that our little boy can speak, because many children with quadriplegic cerebral palsy aren’t able to.”
“Tom finds it extremely hard to control his arms and legs, has a lack of balance and suffers from muscle stiffness and weakness,” Maria explains. “He uses a wheelchair and we’ve been told it is unlikely that he will ever be able to walk unaided.”
Tom, now six, is a bright boy, and thankfully he can see, hear and talk. But everyday activities such as eating and playing with toys are challenging for him. “Tom will need immense levels of care throughout his life,” Maria says.
Action is dedicated to helping children like Tom by funding vital medical research: at the University of Edinburgh a team of specialists hopes to find new ways to encourage brain repair, and so improve movement and co-ordination. At University College London doctors are developing new types of MRI scan to help predict children’s future needs with greater accuracy. Work into hip problems in children with cerebral palsy is also underway.
Maria feels that this work is vitally important: “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,” she says.
You can find out about more current and past studies supported by Action to help children with cerebral palsy here and you might also like to read this lovely blog by Maria about Tom's family camping holiday.
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