VIDEO: Olivia's family playing "waiting game" following stem cell transplant

Back in February, the Louth Leader spoke to the family of little Olivia Volley, from Marshchapel, who has been diagnosed with Sideroblastic anemia with B-cell immunodeficiency, periodic fevers, and developmental delay (SIFD), an autosomal recessive syndromic disorder which has required her to have weekly infusions to give her body protection from viruses, as well as monthly blood transfusions as her bone marrow is not producing white and red blood cells properly.

The syndrome is so rare that there are just 20 current cases worldwide, and she required a risky stem cell transplant, which has a 50/50 chance of being successful and if it works, Olivia will be able to lead a normal life.

After preparation surgery to remove her gall bladder in June, Olivia underwent a week of chemotherapy before the stem cell transplant to stop her immune system, and her dad Jack shaved her head beforehand in case she lost her hair – which she really enjoyed and giggled throughout the experience.

Olivia finally underwent the transplant on Thursday September 7, pressing the button on the transplant machinery herself to start the process (see video below).

And now, almost a week on, Jack said that he and his wife Sally are playing a waiting game to see if the transplant has been successful, and this should become clear within two to four weeks.

Olivia initially caught an infection after the transplant, but she responded well to antibiotics and Jack said the doctors are pleased with her progress so far.

"The doctors have been testing her blood every day to see if her blood levels are what they should be, and making sure her body accepts the new cells,” Jack said, “Then we will find out if the transplant has done what it needs to and done its job.”

Olivia has been full of energy today (Wednesday) when we spoke to Jack, and was playing with a sensory play mat and the toy doctor’s kit donated to her.

"She’s doing really well but it’s really early days and we can’t get ahead of ourselves,” Jack said, “It’s going to be a long journey and there’s so many complications that could occur, so we’re just taking it one day at a time and trying not to think too far ahead.”

Jack and Sally have stayed in Newcastle Children’s Hospital for the past four weeks before and during Olivia’s chemo and transplant, and for weeks at a time over the past year for Olivia’s treatment, and a GoFundMe was set up to help her family with expenses relating to her treatment, including accommodation, travel, specialist equipment and clothing.

"We’re obviously not thinking about work at the moment as looking after Olivia is a full-time job, so any help that people can give us would be so appreciated,” Jack said.

You can make a donation to the family’s GoFundMe page at https://gofund.me/cdccb902