Hunni

Hunni, from Nottingham, has a very complex heart condition that can’t be cured. Despite undergoing major surgery twice and having heart failure, she never lets her condition deter her.

Kelly, Hunni’s mummy, said: “To look at her, you wouldn’t think Hunni is palliative. She is very positive and will have a go at anything. She is determined and sassy like any young girl. She plays football and rides her scooter and her bike. She loves to do hair and makeup and she will try her hand to everything. I am so proud to be her mummy.

“But life hasn’t always been like that for my daughter. Hunni was born with a large hole in her heart, she is missing her main artery and her bottom chambers cross over.

“When she was two, Hunni had surgery to make a main artery and help her blood flow. For a while, this was a success but then Hunni became very poorly; she needed oxygen 24 hours a day and her complexion was always blue. I was given the devastating news that Hunni had heart failure – a condition where the heart is unable to pump blood around the body properly and gets worse over time.

“Hunni had further open heart surgery, which was deemed a success, but I still face the prospect she won’t live a full life.

“Throughout everything, I have been supported by Rainbows. When I first heard the word hospice I wasn’t sure it was what I wanted. But I had my first proper visit when Hunni was 16-months-old and it was so relaxed.

“The staff are fantastic and the support is absolutely amazing. If you want to moan, or chat, or cry there is always that support there.

“At Rainbows I get to spend time with Hunni and my other young children Elias and Phoenix and we have fun; and I also get important time on my own.

“There are lots of arts, crafts and activities, the kids love the Hydrotherapy Pool and the Soft Play and the Music Room. They all have an amazing time, it is like a little holiday. The food is amazing, I would come just for that!

“Elias has Autism Spectrum Disorder and I notice a big difference in him when he goes to Rainbows. I also know Sibling Support is there for both him and Phoenix to access when we need it.

“When Hunni was born, it was so hard. She was born in Nottingham City Hospital and three days later we were in Glenfield in Leicester. It was heart-breaking. We were in a different city and I felt all alone not knowing the future for my baby. It was a very dark time.

“When Hunni was four weeks old we were told we could bring her home. Life completely changed. I had a new-born and wanted to show her off but I was so paranoid if someone had a cold etc; I didn’t go out for three weeks.

“Heart surgery has changed her life and so has the support for Rainbows. At first I had her wrapped up in cotton wool but I needed to let people in and help; the support of parents and godparents and Rainbows has been incredible.

“This experience has made me open my eyes to childhood illnesses. Hunni doesn’t complain about anything. If she has an operation she takes it on like she is a pro. We take the good with the bad. We need to make the memories and let them grow.”