“The car means I don’t have to worry about how we’ll cope going in and out of hospital”
“Olivia was born prematurely at 28 weeks in 2020. She spent the first eleven months in hospital and they just couldn’t work out what was wrong. We’re two years on now and it has been really tough on all the family. The working diagnosis is that Olivia is one of just 58 children known to have ‘SIFD’, which is a genetic disorder that stands for sideroblastic anaemia, immune deficiency, unexplained fevers, and delayed development.”
Family life with Olivia
“She’s very small for her age (she’s two and is still wearing 9–12-month clothing) and her condition means she can’t walk or talk. We’re not sure how much of the developmental delay is due to the syndrome or spending so long in hospital.
“Olivia is very hard to canulate, so she has a portacath, a little device implanted under the skin that provides access to her veins. This heightens the risk of infection, so means every time she has an unexplained fever, she has to go straight into hospital and be on antibiotics for 48 hours to rule out sepsis. At the minute, we’re in every week. The fevers come on so quickly and suddenly, it makes it really hard to plan anything.
“We’re currently waiting for a stem cell transplant at Newcastle. They’ve only done six of these transplants and only three have been successful, which is so scary. She’ll go into hospital for chemo followed by the bone marrow transplant. If it’s successful, we’ll have to be in the hospital for 6-12 months while her body accepts the transplant.
“It’s a lot to cope with but Olivia really is the happiest little girl. She’s a ray of sunshine, always pulling faces and being cheeky. She definitely understands a lot of what’s going on but she’s still so happy and resilient. She loves watching Mr Tumble and Justin’s House, she’s even started signing now which is great for us. We love reading together too.
“My husband Jack works away from Monday to Friday, and Olivia has two older half-brothers too, so there’s a lot to juggle with all her appointments and trips to hospital. Olivia needs one-to-one care, so I’ve given up work to be there for her.”
Family Fund Mobility Support
“When we were contacted to say we were eligible for the Family Fund Mobility Support Programme, I just cried. We’d been really struggling, as the car I had before was really small. We have a Snappi buggy to help with Olivia’s posture, which is quite bulky and separates into two, as well as a big changing bag and the equipment we need to pump feed. One half would fill my boot and the other half would go on the back seat. Then with Olivia’s car seat taking up the other half, we couldn’t go anywhere as a family.”
“Olivia is under four different hospitals and specialists, from Newcastle to Liverpool, so we’re always driving miles and miles to get to appointments. My old car was very old and wasn’t going to last with all of the traveling we are doing. As I’m out of work to care for her, I couldn’t get a car on finance.”
“The DLA support only starts when she turns three so we were absolutely lost as to what we could do in the meantime. The Family Fund Mobility Support Programme was a real lifesaver. The process was quick and effortless, it took less than a week after I found out we were eligible.”
“The best thing is Olivia loves going in the car, it’s her favourite thing. It calms her down and she’s always happy in there. As well as meaning I can get her to appointments and not have to worry about how we’ll cope going in and out of hospital, it means we can go out as a family and spend time together.”