"There's so much here for the children to do; it's a really happy place."
When Olivia was born at 28 weeks, she had 2 bleeds on the brain, a hole in her heart and low HB levels. She had to have blood transfusions “from day one” and her parents were told she wouldn’t survive the night. Looking back, Sally, Olivia’s mum, said: “Every time we thought we had sorted one thing out, something else cropped up. We were eventually sent home after 11 months with no answers, but then she started getting these fevers every week.”
After about 2-and-a-half years of going back and forth to hospitals with various issues trying to get answers, they started working on getting the diagnosis of SIFD, which is Sideroblastic Anaemia, immune deficiency, fevers and delayed development. This is when they decided they would try a stem cell transplant.
Sally said: “When we got to Newcastle, there were only 20 cases recorded worldwide. Only six transplants had been done, of which only three survived, so we went in 50/50. We just couldn’t carry on the way we were, it was our last hope really. When we got there, the damage on her liver was so bad that they didn’t think she’d survive the chemo and they thought she would need a liver transplant before they did the stem cell transplant, but in true Olivia style, she absolutely smashed it!”
Andy's Children's Hospice has been involved in Olivia's care since she was about 10 months old.
“They used to come to the hospital to give me some respite so I could go home and shower or get some clean clothes on. Since coming out, she’s been having Hospice at Home sessions for about 4 hours a week. They play games and do crafts, it just gives me the chance to catch up with friends or get shopping done. My husband works away during the week so it’s just me and Olivia, it’s been a really welcomed service, the hospice is a lifeline.
"There's nowhere else you can get this kind of support. We looked into a babysitter but there's nobody trained to look after Olivia without paying huge amounts of money to give you that little bit of respite. So it's amazing that this service is here and that we're able to use it, you don't have to worry that she's in safe hands.
"People think hospices are going to be sad places, but it's so kind and warm. It's just a nice, safe place for the children to come, interact with other children and give parents a break. There's so much here for the children to do, it's a really happy place. Olivia loves coming and I love bringing her; she doesn't want to leave!"
Olivia is now over a year post-transplant and she hasn’t had a hospital admission since April! Sally said: “ We weren’t able to go out or see anyone in case she caught something and essentially lived in isolation for two years. But the transplant seemed to work and we’re finally able to live a normal life. She’s just started school for the first time, which we never thought we’d see, and she absolutely loves it! She’s just so amazing, she’s been so brave and smiled through every minute of it, we’re so proud of her.”