It’s been a tough time for 12-year-old Tanesha Ives and her mum, 46-year-old Amanda Bell, who have been at Newcastle Freeman Hospital for the last six months.
She was born with complete atrioventricular septal defect, meaning there was a hole between the top and bottom chambers in her heart and there is a shared valve in the middle, rather than two separate ones.
At five weeks old, she had to undergo an operation which took almost ten hours, and Tanesha later developed sepsis and bowel problems but did not need further surgery.
Tanesha spent a total of eight weeks in hospital but when she was 18 months old, she suffered a complete heart block - where the heart can’t regulate its own beat - and had a pacemaker fitted.
Throughout the years Tanesha has had four pacemakers, including one in 2015 where she stopped breathing in her sleep.
After a few months in Freeman Hospital, where Amanda has both slept in the ward and been housed by The Sick Children’s Trust, doctors told the family that Tanesha would be listed for a transplant - a procedure which only occurs about 200 times each year in the UK.
Her mum told the Chronicle: “She was issued for a transplant on September 8 and it took around six-and-a-half weeks for her to receive a donor heart.
“It was such a relief when we were told but I don’t think I was ready for it because of how quickly it went.
“She’s doing really well but after the surgery she caught pneumonia and had ICU delirium for a week, but she’s doing okay now.
“She was having hallucinations but her medication has helped with that.
“She’s been in the hospital for five-and-a-half months now and we’re hoping that we’ll be able to go home soon.”
Amanda has not been back to her home, on Park Road, for almost six months as she’s been staying with Tanesha in Newcastle - meaning she’s only seen her six-year-old daughter Ashante once in half a year.
“Spending Christmas at home is such a big thing and if we could be back then it would be amazing,” she added.
“If we do come home we’d have to isolate for seven weeks because she’s got a high risk of infection.
“This has been so hard and it’s really been an emotional rollercoaster.
“I’ve been torn between missing my other kids and then being with Tanesha.
“Throughout the last six months I’ve been staying with The Sick Children’s Trust who have put me up and over the last four weeks I’ve been staying on the ward with her - it’s hard because you’re moving around all the time and you’ve got no routine at all.
“I have three other children, two are grown up, and I’ve got Ashante who I’ve only seen once.
“I just want to be home for Tanesha - it’s not going to be a walk in the park but we’ll take each day as it comes.”
Tanesha, who is obsessed with movie franchise Marvel, has been on an incredible journey throughout her life - which has also seen her nominated for a Young Champions award - and she’s now a superhero in her own right.
Amanda has thanked the community for their unwavering support throughout their ordeal and has said the donations she received - more than £1,400 - helped incredibly.
“People have been so amazing throughout this all,” she added.
“The donations have been so helpful and I’m immensely grateful for everything that everyone has done.”