With a smile that could melt any heart, Tom Barnes is the face of a new fundraising appeal by children’s charity Action Medical Research.
The Sussex-based charity hopes to raise awareness of the vital need for support for research to help children like Tom who are affected by cerebral palsy.
Each year around 2,000 babies born in the UK are diagnosed with cerebral palsy1,2. This lifelong condition affecting muscle control and movement is caused by damage to the brain before or during birth.
Tom and his twin sister Iris were born two months early after their mum Maria developed the serious pregnancy complication pre-eclampsia.
Maria and husband Terry were concerned about Tom from his earliest days because he seemed very stiff, had great difficulty feeding and screamed constantly. He was diagnosed with cerebral palsy shortly before his first birthday.
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 exact cause of this injury is not known.
Maria and Terry hoped that Tom would not be too severely affected. But, sadly, a brain scan called an MRI carried out at the Royal Sussex County Hospital in Brighton around a month later confirmed that Tom has quadriplegic cerebral palsy. Maria explains: “Both sides of his brain are affected, governing control of all four limbs and his torso – a severe physical disability.”
Tom is a bright boy, and thankfully he can see, hear and speak. But he finds it extremely hard to control his arms and legs, 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. Even using a special walker that fully supports his body, he finds it difficult to move very far,” says Maria.
“Everyday activities such as eating and playing with toys are challenging for him. Tom will need immense levels of care throughout his life.”
Despite the challenges he faces, Tom is a positive and happy child: “Tom is really funny and very brave and wants to be involved in everything that’s going on,” Maria says. “In his imaginary play he’s not disabled – he’s a fireman or an astronaut. He is a happy, determined little boy.”
She adds: “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.”
Problems affecting the hip joint are a key cause of disability for children with cerebral palsy, often resulting in significant pain and reduced mobility, and this is something that has affected Tom. He has endured muscle-release surgery on his legs and hips because his muscles were pulling his joints out of place.
Action Medical Research recently awarded a grant of more than £150,000 to a team based at the One Small Step Gait Laboratory which is part of Evelina London Children’s Hospital. 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.
Lead researcher Dr Adam Shortland says: “We hope to develop a safe new technique that can be used regularly to spot early hip problems in children with cerebral palsy. We are also investigating whether the new technique can be used to predict whether any hip problems a child has are likely to get worse.”
Action is also funding research at the University of Edinburgh, where a team of specialists is studying new ways to repair the brain damage that causes the symptoms of cerebral palsy.
Their ultimate goal is to develop medicines that stimulate natural healing and therefore ease children’s movement problems.
Dr Veronique Miron, who is leading the study, explains: “We think naturally occurring cells called macrophages can release substances that stimulate brain repair. We’re trying to find out more about these substances, because it’s possible that they might be suitable as future medicines for cerebral palsy.”
“Medicines that stimulate brain repair might improve the quality of life of children with cerebral palsy by increasing their mobility and independence,” continues Dr Miron. “We hope our work will one day lead to such treatments.”
Research like this means the world to Tom’s mum Maria, who recently spoke about her family’s experiences to a group of Action Medical Research volunteers at Cottesmore Hotel Golf and Country Club near the charity’s head office in Horsham.
“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.
“We adore Tom just exactly as he is. He is brave and funny and he does not let cerebral palsy define him,” says Maria. “We are determined that Tom 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.”
** Ends **
Notes to Editors
- A set of hi-res photos of the Barnes family – twins Tom and Iris, big sister Molly and parents Maria and Terry – is available, please ask Kate Lee for a link on 01403 327478 or firstname.lastname@example.org
- Tom is on the front cover of the spring/summer edition of the Action Medical Research supporter magazine Touching Lives
- To find out more about the Action Medical Research fundraising appeal please visit https://fund.action.org.uk/cerebral-palsy/donate
1. NHS Choices. Cerebral palsy. http://www.nhs.uk/Conditions/Cerebral-palsy/Pages/Introduction.aspx Website accessed 7 February 2017.
2. Office for National Statistics. Overview of the UK population: February 2016. Figure 1: UK births and deaths.
Website accessed 7 February 2017.
For further information on Action Medical Research:
Please contact Kate Lee, Research Communications Officer (Mon-Weds)
Action Medical Research is a leading UK-wide charity saving and changing children’s lives through medical research. For 65 years, we’ve helped pioneer ways to prevent disease and develop treatments benefiting millions of people. Our research has helped to beat polio in the UK, develop ultrasound in pregnancy, fight meningitis and prevent stillbirths. But we urgently need to develop more new treatments and cures for sick babies and children and we can’t do it without you.
Join our fight for little lives today.
Charity reg. nos 208701 and SC039284.
Evelina London Children’s Hospital is part of Guy’s and St Thomas’ NHS Foundation Trust. www.evelinalondon.nhs.uk Evelina London treats around 55,000 children a year across hospital and community services. Facilities include 141 inpatient beds, a 20-bed paediatric intensive care unit, a 52-cot neonatal intensive care unit, six dedicated children’s operating theatres, and a kidney dialysis unit. Evelina London cares for children from across south east London, and is also a regional referral centre, admitting children from all over the south east of England for highly specialist care. Evelina London isn’t like other hospitals. It’s only for children and young people – and it was designed by children, for children, to make every child who comes through our doors feel as safe, supported and special as possible. To support or donate to Evelina London visit http://www.supportevelina.org.uk/ or text ‘Evelina’ to 70800 to donate £5