A terminally ill four-year-old from Hampshire and her family have been able to go out and enjoy life as much as possible and make memories to treasure, thanks to a special buggy and a car seat.
Little Keira Elmer from Basingstoke has a progressive neurological disease called Alpers Syndrome, which over the past 13 months has caused her to lose her sight, her ability to stand, walk and sit, as well as her ability to communicate and feed herself. She has also developed continuous epileptic seizures which affect both her arms and legs.
Keira’s parents, Lee and Elizabeth, say the loan of a buggy and a grant for a special car seat from Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness, has been a ‘godsend’. Now they are able to leave the house and make the most of the time they have left with her, which also helps create memories which can be kept for their youngest daughter, Chloe, who is just 20-months-old.
“Keira was aged three years and three months when she was diagnosed with Alpers Syndrome, but things had begun to spiral downwards after she had her first epileptic seizure in August 2014,” said Elizabeth.
“We were told she had been born with the condition, which is a progressive degenerative disease of the central nervous system. We hadn’t heard of anything like this before, we were totally in shock. We went home and did the one thing you aren’t supposed to do – we googled it.
“We found out that there was no cure. That it kills more children than cancer, but that no one has really heard of it. Everything that can happen with this disease has happened to Keira so far, apart from developing liver disease, but when that happens it means there isn’t long left.
“It was – and is – so devastating. We are just taking each day as it comes. Yesterday was better than today – and tomorrow could be better or worse.
“The buggy and the car seat have given me the freedom to take the girls out, knowing that Keira is comfy and safe. Because we aren’t restricted we can get out to enjoy family time.”
The £2,665 car seat funded by Newlife keeps Keira fully supported, safe and in just the right position to help her breathing when she travels. Elizabeth said: “It’s much more suitable for her needs and means she is safe. It also has a swivel base which makes it much easier for me to get Keira in and out of it.
“For the loan of the buggy, I had a conversation with nurses at Newlife on Monday, it was approved on the Tuesday and delivered on the Thursday – along with a buggy-board for my youngest daughter, which they didn’t have to include. It also came with a basket underneath and weather protection, which aren’t cheap to buy. As the pushchair can be rear facing or forward facing it means I can see her at all times and know if she is distressed. Chloe stands on the buggy board and talks to Keira through the bars while I push them.
“These two pieces of equipment are amazing, they mean we can go out to take photographs and videos of what we are doing and so Keira can enjoy the time she has left and we can have memories of her documented for when Chloe is older.
“Now we can go out knowing Keira is in equipment which is secure enough so we are not worried about her head flopping or her not being in the right position. We go out as much as we can and without the buggy or the car seat this wouldn’t be possible.”
One of the services offered by Newlife Foundation is the loan of equipment when a child’s safety is at risk. The emergency loan service includes specialist wheelchairs, buggies, beds, seating and portable hoists which can be delivered to the family home, often within 72 hours.
Newlife also has Hampshire fund which is an opportunity for local people to help local disabled children – and every penny donated or fundraised in Hampshire is guaranteed to support families in the county.
Right now, there are another ten children with disabilities and terminal illness in Hampshire with needs totalling £13,149. If you think you could help, go to the website www.newlifecharity.co.uk/hampshire and click on the Donate button. Alternatively contact the Newlife County Liaison Team on 01543 431 444. Newlife guarantees that 100 per cent of the money donated to the Hampshire fund will help provide specialist equipment for children in the county.
To find out more about Newlife’s work in Hampshire, go to: www.newlifecharity.co.uk/local and click on the map. For full details of Newlife Foundation’s range of practical support for disabled and terminally ill children and their families, call the Newlife Nurse Helpline – 0800 902 0095 (free from UK landlines and mobiles) – or go to: https://newlifecharity.co.uk
Pictured: Keira Elmer and sister Chloe