Little Ella Stevens faced a huge battle after being born prematurely at just 23 weeks of pregnancy. However, when she was stable enough to return to her Stevenage home after spending more than 11 months of her first year of life in hospital, she and her mum faced another difficulty – being able to travel safely as a standard car seat doesn’t provide the extra postural support she needs.
Thankfully, a special car seat from Newlife Foundation for Disabled Children, the UK’s leading children’s disability charity, means they can now travel wherever they need to. Ella, who is now 17-months-old, was provided with a £355 rear facing seat with lots of extra padding to support her posture and keep her comfy, as well as a five-point harness to keep her secure as she grows.
Mum Janice said: “Ella had most of the complications of being born prematurely and has already been on one hell of a journey. With the car seat from Newlife I can now take her out confidently by myself, knowing that she is safe.”
Ella had surgery for a hole in her heart when she was just 56 days old. She has chronic lung disease for which she needs continuous oxygen, has had laser eye surgery and has cysts on both sides of her brain. She has evolving Cerebral Palsy of both arms and legs, a weak trunk and poor head control, very strong legs, but no coordination in her arms. Ella also has reflux which means she can’t swallow food properly so she needs to be fed through a tube.
In her first year Ella also battled deep vein thrombosis and has been admitted to intensive care with pneumonia twice, as a simple cold can be life threatening for the brave little girl. However, Ella was able to go home with her mum, Janice, and 19-year-old sister, Harley, in February this year.
Janice said: “It’s amazing to have her home now, although we still go backwards and forwards to different hospitals for different conditions, including Great Ormond Street Hospital in London. It was terrifying to be at home with her to start with and really tricky to have to cart around all her medical equipment, but we are getting used to it and coping.”
However, Janice admits travelling anywhere by car was difficult as Ella only had a standard car seat which didn’t support her properly, leaving her with no option but to create extra makeshift padding and support with towels. She also needed another adult in the back of the car with Ella to prevent her pulling out the tubes necessary for feeding and medication. As a result Janice only took Ella out for the most essential appointments and would continuously look in the mirror to reassure herself that Ella was properly supported and towels were not over her face.
Shocked at the price of specialist car seats, Janice applied to Newlife Foundation for Disabled Children for help. Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Janice said: “The car seat is a simple piece of equipment, but it has been a godsend. I can drive to the lake now, which is something we enjoy doing, and we can go on trips and just go out, which is something we couldn’t do before.
“We have so much more freedom now and I know that she is safe, secure and happy.”
Newlife has provided £206,378 of equipment for 157 children in Hertfordshire and the charity is currently working with a further seven families in Hertfordshire with combined equipment needs of £28,196. If you think you could fundraise or donate to help a local child, call our County Liaison Team on 01543 431 444 or email [email protected] For further information about how Newlife supports families in the county, go to www.newlifecharity.co.uk/hertfordshire.
www.newlifecharity.co.uk/hertfordshire – giving local people to chance to help local disabled children like Ella, and every penny fundraised or donated in Hertfordshire is guaranteed to support families in the county. The Newlife Hertfordshire Fund supports equipment provision for under 19s facing any significant disability whether acquired through birth defect, prematurity, accident or illness.
Pictured: Ella Stevens