A brain injury has left nine-year-old Elijah unable to do anything for himself and needing round the clock care - but he embraces life with a smile on his face.
“I am constantly in awe of him,” said mum Lizzie. “Despite everything he faces, Elijah is an incredibly happy, cheeky and fun-loving little boy who just loves life.”
Elijah was born 14 weeks early at just 2lbs 8oz and initial brain scans were promising. However at just four-weeks-old, a hernia caused a perforation in his bowel. Medics battled to save Elijah who was fighting for his life at Nottingham’s Queen’s Medical Centre. He was so poorly, his body had begun to shut down and his parents, Lizzie and Tom, were told several times he might not survive.
“I think I have blocked a lot of this time out,” said Lizzie. “He was just four weeks old. We thought ‘we can’t lose him now’; everything had been going so well. He was transferred from Derby to Nottingham in the middle of the night. I was scared and I was terrified. I still struggle to go to the QMC now, it brings back so many painful memories and I find it overwhelming.”
Amazingly Elijah pulled through but the injury to his brain caused widespread damage. He is unable to talk, eat or move independently. He is profoundly deaf and has frequent seizures.
When he was four-years-old, the family first visited Rainbows and have been supported by us ever since. Elijah is now nine and he, and his brother, Zach (four), love to visit our hospice.
“I was excited to see Rainbows and was wowed by it. Tim found it more overwhelming to start with but it had everything, and more, that we could wish for for Elijah,” said Lizzie.
“Rainbows doesn’t feel at all how you expect a hospice might feel and is more about having fun and making precious memories together.
“Elijah loves the Hydrotherapy Pool and the benefit on his muscle tone has been huge. He thinks the waterbed and lights in the Multisensory Room are great fun and thoroughly enjoys being in the garden where he can use the accessible swing and roundabout.
“As a family, we personally have benefited from Family Support services, counselling and the home sitting services during Covid. The provision is amazing for all of us, we wouldn’t be without Rainbows.
“My professional background is in nursing where I worked with children with very complex health needs. I had supported families like ours for so long, and all of a sudden, we are on the other side of the fence. No amount of training could have prepared me for that.
“I like to think I was always a good nurse but actually, I had no idea what those families went through on a day-to-day basis. I don’t think you can truly understand that unless you are living it. Rainbows helps us to get through the tough times and, along with so many other families, we rely on their support.”