Family's best gift as Olivia goes home for Christmas!

Three-year-old ​​Olivia Volley was born at just 28 weeks gestation, and since then has spent much of her young life in and out of hospital, including the first 11 months of her life, with countless operations and procedures while doctors searched for answers as to why she wasn’t thriving as she should.

She was finally 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 current cases worldwide.

After undergoing blood transfusions every three to four weeks as her bone marrow was not producing white and red blood cells properly, it was finally decided that she required a risky stem cell transplant, with a 50/50 success rate.

She had preparation surgery to remove her gall bladder in June, followed by a week of chemotherapy before the transplant to stop her immune system, and finally Olivia underwent the risky procedure in September at Newcastle Children’s Hospital.

Her parents Jack and Sally stayed in Newcastle Children’s Hospital for the four weeks before and during Olivia’s chemo and transplant, and for weeks at a time over the past year for Olivia’s treatment, travelling back and forth to Newcastle which put a huge strain on their family.

The transplant was a success and while her body still needs to learn how to make its own white blood cells and she will need to be monitored, Jack said the doctors have been amazed with her progress and how she has handled everything.

"The transplant seems to have worked and her haemoglobin levels are are holding so she won’t need to have blood transfusions any more,” Jack said, “We still need to keep an eye on her liver but we’re passed the high-risk stage so hopefully, this will change her life.”

Olivia was supposed to be discharged last week, but she picked up a small illness so she had to stay in for a little longer.

But she finally came home for Christmas yesterday (Thursday), and her dad Jack has spoken of their relief and the “best Christmas present ever” to finally have Olivia home.

"It’s taken a while for things to sink in,” Jack said, “We’ve been waiting for so long to see if she would survive the transplant and then if it had worked.

"We didn’t allow ourselves to think about what the future would look like, but now we’re really excited and can think about getting her into school next year once her immune system has had time to grow.

"Having her home in time for Christmas is the best present ever.”

Jack said when the family arrived home, Olivia was so excited to see her brothers Harvey and Alfie, and once they were all home and settled the adrenaline buzz wore off and they were exhausted!

The family are having a quiet Christmas at home, with short visits from her grandparents as Olivia cannot be around school-aged children due to her fledgling immune system.

As for the future, as Olivia has spent so much of her life in a hospital bed, she is unable to walk unaided but it is hoped that in time, she will catch up with her peers and live a normal life.

Jack and Sally have now extended their heartfelt thanks to everyone who has supported the family, both financially and emotionally, during this difficult time:

“It [the support] has literally saved a life and it wouldn’t have been possible without that support

"I also couldn’t have done it as a single parent so I’ve been so lucky to have Sally.

"We just hope the next three years are better than the last three.”