Tom was less than a year old when he was diagnosed with quadriplegic cerebral palsy. Everyday life is challenging for him and he will need a lifetime of care. But, as his mum Maria explains, he is a bright and determined little boy, who refuses to let his disability define him.
“Tom is really funny and very brave and wants to be involved in everything that’s going on,” says his proud mum Maria. “In his imaginary play he’s not disabled – he’s a fireman or an astronaut.”
He is a happy little boy, but sadly Tom does have a severe physical disability. His cerebral palsy affects both sides of his brain, governing control of both his arms and his legs and his torso. He finds it extremely hard to control his limbs, has a lack of balance and suffers from muscle stiffness and weakness.
“Tom uses a wheelchair and we have been told it is unlikely that he will ever be able to walk unaided,” explains Maria. “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 challenging. He will need immense levels of care throughout his life,” she adds.
Each year around 2,000 babies born in the UK are diagnosed with cerebral palsy. It is a lifelong condition, affecting muscle control and movement, and is caused by damage to the brain before or during birth.
Tom was diagnosed shortly before his first birthday and discovering that their baby son would face a lifetime of disability was heartbreaking for Maria and husband Terry.
The couple had had a nagging sense that something was not right from their son’s earliest days. He’d always seemed very stiff and had great difficulty feeding. He hadn’t made eye contact until he was about seven months old and his hands were always held tightly in fists. As he grew older he struggled to sit and couldn’t grasp things. But initially medics had dismissed the family’s concerns.
Eventually a new doctor confirmed their worst fears. The family, which also includes Tom’s older sister Molly and his twin sister Iris, had hoped that he would not be too severely affected. But sadly an MRI brain scan revealed serious damage.
Doctors say that Tom’s cerebral palsy was caused by a type of brain injury called periventricular leukomalacia. This most often occurs when parts of the brain are starved of blood and oxygen. The cause of this injury is not known.
Maria and Terry were told it was unlikely that Tom would ever walk unaided, may develop vision problems, and might also be affected by epilepsy.
It was devastating news but, Maria says, “At least we had a name for what we were dealing with. 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.”
Now six, Tom attends a school which offers a specialist form of education for children with cerebral palsy. He has developed a rare type of epilepsy and takes medication every day to control this, as well as medicines to improve his muscle tone and help his digestive system to work properly.
He has also endured muscle-release surgery on his legs and hips, because his muscles were pulling his joints out of place.
Life can be difficult for Tom and his family but his mum says: “We adore Tom just exactly as he is and we are determined that he should lead as normal a life as possible. He’s still a little boy and we want him to have a normal childhood and just have fun.”
Maria feels that research that could help children like Tom is vitally important.
“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.”
Problems affecting the hip joint are a key cause of disability for children with cerebral palsy and often result in significant pain and reduced mobility. This is something that has affected Tom.
Action Medical Research recently awarded a grant of more than £150,000 to a team based at the One Small Step Gait Laboratory at Guy’s Hospital, London. They aim to develop a portable 3D ultrasound system for scanning the hip joints of children with cerebral palsy. This could eventually replace the use of repeated x-rays for monitoring these children, providing a safer and more accurate way of assessing their hip development. Since ultrasound scans could give more detailed pictures, it may also make it easier to predict early on which children are at greatest risk of full hip dislocation, meaning they can be treated sooner.
Action is also funding a team of specialists at UCL Great Ormond Street Institute of Child Health, who are investigating whether new MRI brain scans could help doctors predict the severity of movement difficulties children with cerebral palsy are likely to experience in the future. This could eventually make it easier to plan their care.
Action Medical Research has a proud history of funding research to help children with cerebral palsy and other disabilities.
Thank you for helping us make this vital work happen.