Five-year-old with rare spinal tumour needs specialist car seat to travel

Eunice Keightley is prescribed daily amounts of adult strength painkillers to combat high levels of pain but needs to travel around 400 miles per month for hospital appointments, hospice visits and to attend school – all in a high-street car seat which doesn’t provide enough support for her spine.

As the car seat isn’t suitable for her needs, it causes her to lean to one side and slump forward, which risks blocking her airway and adds to her pain and stress. Eunice urgently needs a specialist £3,382 car seat so she can travel in safety and comfort to and from her home in a small village just outside of Northampton. But no funding is available for specialist any car seats through her local health or social care providers.

Now Newlife the Charity for Disabled Children has stepped in with an appeal to help raise the funds necessary to provide Eunice with the specialist car seat. Newlife is the largest charity provider of specialist disability equipment in the UK.

Eunice’s Mum, Tracy, said: “This specialist car seat is vital to keep Eunice comfortable and safe. We are now at the point where we don’t go out in the car unless it’s absolutely necessary, but we have so many appointments that it all really adds up - and travelling so many miles each month means I’m always worried about being in an accident with Eunice in her current car seat which can’t protect her properly.

“The specialist car seat experts have recommended for Eunice would provide all the extra support she needs. It also has a seat which twists out to make it easier and safer for me to lift her in and out and has a wedge so I can ensure she is in exactly the right position, which would be amazing as its increasingly difficult to transfer her in and out of the car safely. But specialist car seats are so expensive and with the current cost of living being so high it’s just impossible for me to afford.”

Following her diagnosis at the age of two, Eunice endured 18 months of grueling chemotherapy and Tracy gave up work to become her daughter’s full-time carer. Due to the cancer, Eunice’s pelvis has also become twisted and tilted and she has also developed a curve in her spine, which needed metal rods inserted to straighten it – which are extended every six months as she grows. In a further blow Eunice is now developing a second curve in her spine and surgery to straighten this means she will lose her ability to walk.

Tracy added: “Eunice is such a happy bubbly child when she’s not in pain, but she does get sad when she has to go in her current car seat. Being able to have this specialist car seat would make a huge difference to our lives. She would be so much more comfortable, and it would open up so many doors to us and we could do more outside.

“I’d love to take Eunice to the seaside and make some wonderful memories for us. To know she was travelling safely and comfortably would reduce my stress levels massively.”

A recent Family Fund survey revealed nine out of 10 families with disabled children are struggling or falling behind with household bills, with many forced to do without things like food, heating or basic furniture. It highlighted the unsustainable strain families face as they try to cover sky-high costs on top of severely reduced incomes due to intense caring responsibilities and the three-times-higher cost of looking after a disabled child.

Kam Dulai, Newlife’s Child and Family Support Manager said: “Eunice deserves to be as safe and comfortable as possible when she is travelling, and it’s clear this car seat will make such a huge difference to her life, enabling them to travel wherever they need to with the peace of mind that Eunice is safe. Anyone who can donate to this appeal will be directly helping to change her life for the better.”

To donate please visit https://newlife.support/Eunice

You can also call 01543 462 777, or email [email protected]. Always get the bill payer’s permission. Any money raised above the amount needed for a specialist car seat for Eunice will be used to help other disabled and terminally ill children in need.