Erin

Erin, from Leicestershire, has two life-limiting illness and is recovering from cancer.

But Erin is full of smiles and happiness and doesn’t let things get her down.

Erin’s parents, Tracy and Nigel, were advised when their daughter was three-years-old that she had a genetic condition called a Chromosome Rearrangement, which means pieces of chromosomes are missing, duplicated or moved around, leaving Erin with learning difficulties.

As Erin got older, Tracy and Nigel noticed she wasn’t meeting her milestones. Erin was unable to stand or walk. At the age of five, Erin was diagnosed with Spinal Muscular Atrophy (SMA), a genetic condition that makes muscles weaker and causes problems with movement.

“It has been quite hard,” said Tracy. “In her earlier years, it wasn’t as bad but as she has grown and got older, it has become harder. It is very unfortunate that Erin has both conditions.

“In 2019, it got worse for us as Erin had a Wilms tumour, a type of kidney cancer, and had to have a kidney removed as well as chemotherapy. She is currently in remission. Then Covid hit and it became a very anxious and difficult time for our family. I did think why us? Why something else?”

Erin is confined to a wheelchair so their home in Market Harborough has been specially adapted with a lift and a wet room.

When at our hospice, Erin loves to spend time in the Hydrotherapy Pool as well as going on off-site trips and walks to nearby places. Erin also gets to cook and bake in the specially adapted kitchen in our Young People’s Lounge.

“When Erin goes to Rainbows, I know she is in very safe hands and she has an amazing time,” said Tracy. “She gets to be independent and she is so well looked after. When she is there, it gives our family some respite from the 24-hour care and it also gives us, along with her 19-year-old brother, Ben, the chance to do things that we might not be able to do with Erin in her wheelchair.

“Just knowing Rainbow is there at any time is wonderful. On New Year’s Eve in 2022 our boiler had broken and Erin couldn’t wash her hair. I called Rainbows and she went there to have a shower and she ended up staying for a long weekend playing games and having a take-away for New Year’s Eve. She had the best time and it is moments like that that you couldn’t make up.”

Erin added: “I find it hard to do things for myself. And I struggle socially because of my learning difficulties. But at Rainbows, I can really be myself. I can meet other people and it is comforting to me to know I am not the only one who is different.”