Brave Olivia living life to the max

Olivia, from Marshchapel, was diagnosed with Sideroblastic anemia with B-cell immunodeficiency, periodic fevers, and developmental delay (SIFD), an autosomal recessive syndromic disorder, of which there are just 20 cases in the world before she was a year old and has spent most of her life in hospital.

After undergoing blood transfusions every three to four week, it was finally decided that she required a risky stem cell transplant, with just a 50/50 survival rate, which she finally did in September 2023 at Newcastle Children’s Hospital just weeks after her third birthday.

The transplant was a success, and even better, she came home from hospital for Christmas.

And now, Olivia’s stem cell counts have continued to remain steady so that all restrictions on what she and her family can do have been lifted, so not only can she restart nursery, but she’ll be able to start school next year.

Her mum Sally said: “We’re allowed out into the big wide world again and it’s going to be life-changing.

"She can go back to nursery, and at the weekend we were able to go out for a meal with the family and she was able to spend time with her cousins – it was so nice to be able to do be able to have the freedom to go somewhere and not worry if she’s going to need to wear a mask.”

Looking back at how far Olivia has come, considering the transplant had a 50/50 success rate, Sally said it is amazing how resilient their little girl is.

"We went into Newcastle prepared for the worst, and she’s absolutely smashed it,” she said, “Luckily she's too young to remember what’s happened and that she spent so long in hospital – for her, it’s all over and she’s happy, but me and Jack will never forget.

"I still have to pinch myself that’s it’s really happened and to look at her now, you wouldn’t even know she’d had a transplant.”

Part of SIFD means that Olivia has a developmental delay, but Sally said that the aim is to have her taking steps unaided by September with physiotherapy before she starts school.

"Her speech is coming on so much and she’s got so many more opportunities now we can be a normal family.”

Over the Easter holidays, the family have many activities planned now that Olivia’s immune system is strong enough to be in public places organised by Sunflowers Children’s Action Group, a Grimsby-based charity which organises special events and activities for children who suffer from life-limiting or life-threatening conditions, including a special cinema screening and a chocolate making session with Lab Cocoa.

Sally and Jack have now extended their thanks to everyone who has supported them on Olivia’s transplant journey:

"It’s been a really tough time and knowing everyone has been thinking of us has really helped us,” sally added.

"We’d like to thank everyone who has helped us on this journey and we can’t wait to get out there and live our lives like a normal family.”