Hopes Tom’s story will boost cerebral palsy research

A six-year-old with cerebral palsy is to become the new face of a charity’s fundraising campaign.

The story of young Tom Barnes will be used to encourage people to support the work of Action Medical Research, which is looking to fund research to help children in a similar position.

Tom and his twin sister Iris were born two months premature after their mum, Maria, developed pre-eclampsia – a potentially life-threatening complication during pregnancy.

Maria and the babies’ father, Terry, were concerned about Tom because he seemed stiff, had trouble feeding and was constantly screamed.

Shortly before his first birthday, doctors were able to confirm that their son had cerebral palsy. In this case the condition was attributed to a type of brain injury called periventricular leukomalacia.

Maria said: “Both sides of his brain are affected, governing control of all four limbs and his torso – a severe physical disability.

“Tom uses a wheelchair and we have been told it is 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 challenging for him. Tom will need immense levels of care throughout his life.”

Action Medical Research recently received a £150,000 grant which enabled their expert team to develop a portable ultrasound system, capable of scanning the hip joints of youngsters with cerebral palsy. This technology eliminates the needed for repeated x-rays.

The charity is also investing in cutting edge research into new ways to repair the brain damage that causes the symptoms of cerebral palsy.

At EnViva Paediatric Care, our experienced staff can provide complex nurse-managed homecare for babies, children and young people with a range of disabling conditions, including cerebral palsy. For more information about the services we provide, please contact us today.