An East Riding of Yorkshire couple whose two children are not expected to live past the age of ten have received specialist car seats from a children’s disability charity so they can travel safely, which is allowing them to make the most of the time they have together.
Tom and Charlotte’s children, Ava-Grace, aged three, and Henry Smith, aged two, have both been diagnosed with rare brain malformations, have visual and hearing impairments, the highest level of Cerebral Palsy and Epilepsy. As a result, they are unable to walk, talk, or even hold up their own heads, and need 24-hour care, forcing both parents to give up work.
As well as needing to drive to multiple weekly medical appointments from their Bridlington home, Tom and Charlotte wanted to do as much with their children as they can, while they can, but standard car seats didn’t support their children safely enough. It left the family restricting their activities, until their children’s occupational therapist recommended, they contact Newlife the Charity for Disabled Children.
The national charity provides a range of services for disabled children and their families, including grants for equipment, emergency equipment loans for when a family is in crisis or don’t have time to wait. They also offer Play Therapy Pod loans so all children can experience the joy of play, and a nurse helpline for support on a range of issue from benefits to condition specific advice.
Newlife was able to quickly provide both Ava-Grace and Henry with £3,200 specialist car seats to give them their necks and bodies the extra support they need to keep them safe and comfortable while travelling – particularly Henry who is at risk of choking on his own saliva and who has developed a 30-degree curve to his spine.
Tom, said: “Ava-Grace wasn’t diagnosed with much until after Henry was born and, for the first two months of his life, we thought he was healthy. Then we were told they both had the brain conditions lissencephaly and microcephaly and the rest of their diagnoses came quite quickly after that – although Henry’s lack of head support and epilepsy is much worse and is affecting his brain, causing him to deteriorate a quicker rate. It’s been hard. Henry has nearly died twice and Ava-Grace was in a coma for a week after having sepsis.
“We have lots of medical appointments but using their old car seats was difficult. Transferring them in and out was painful for them – Henry especially would be in tears – but it also wasn’t safe as they didn’t have the right head or body support.
“We urgently needed car seats with the right support, which also have a swivel base so we could transfer both children in and out of their car seats without causing them pain. It also protects our backs too – we worried about what would happen if we couldn’t look Ava-Grace and Henry properly if our backs became too damaged from lifting, especially as they are both getting heavier.
“Because of the curve to Henry’s spine, no car seat will ever be 100 per cent perfect, but the one from Newlife is as close as it can be, and the one for Ava-Grace is great. Knowing they are safe and not in pain when we make a journey helps us feel like things are falling into place, especially as the house we are in is now being adapted to make caring for them easier too.
“We were even able to make the three hour journey to Blackpool for a holiday and we can take the children to petting zoos and farms, or even just a drive so they can feel the wind in their faces. Because of the car seats we can now make memories while we can.”
Kamaljit Dulai, Newlife Child and Family Support Manager, said: “We are so glad we could help Ava-Grace and Henry. Car seats that can keep children safe and free from pain so they can attend medical appointments, go about normal family life and make magical memories are vital, but these can cost thousands of pounds, which is far beyond the means of many families, even before the cost of living crisis.
“At Newlife we are here to help families of disabled and terminally ill children where the lack of the right equipment means they are living in pain, unsafe, unable to do things others take for granted or denied the opportunity to reach their potential, trapped unnecessarily in hospital, or even in a crisis situation. New application forms mean this is now easier than ever too.”
To discover more about how Newlife can help, click here or call the Newlife Nurse helpline on 0800 902 0095 between 10.00am and 4.30pm, free from mobiles and landlines, Monday to Friday, with an answerphone facility outside of normal hours.
