09 September 2023 , 17:10
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Little Jakob Frost gets a hug from adoring big sister Freya, who will forever be his hero after saving his life.
The 18-month-old was born with rare condition Mirage Syndrome, which affects one in a million, and his one hope was finding a perfect donor for a bone marrow transplant. Devastated parents Nicola and Mark were not matches – so up stepped big-hearted Freya, five, who proved to be a perfect fit. “When she heard she could be his donor and help him, Freya didn’t pause for a second,” says tearful social worker Nicola, 35. And a smiling Freya chips in: “I love my little brother, I’d do anything for him. He’s amazing.”
Little Jakob and Freya with parents Nicola and Mark (Sarah Thew Photography)However, despite the good news about Freya being an ideal donor, doctors warned there was still only a 30% chance of survival. The family’s nightmare began when Jakob was born by emergency C-section in January last year at 37 weeks, after scans showed he was underweight. Nicola, of Durham, says: “After four weeks, Jakob got moved from our local hospital to Newcastle Royal Victoria Infirmary but no alarm bells were ringing. “His oxygen levels were a bit low and he wasn’t feeding properly but it didn’t seem that bad.”
Jakob was discharged at 11 weeks but deteriorated – and it would be another three months before Mirage Syndrome was diagnosed. What it stands for was frightening enough: Myelodysplasia (a rare blood cancer), Infections, Restricted growth, Adrenal insufficiency, Genital phenotypes (sex organ problems) and Enteropathy (intestinal damage).
Back in hospital, Jakob had to be fed through a nasal tube, a shunt was fitted into his skull to drain fluid on his brain and he needed regular platelet and blood transfusions. Then, at home last November, he developed life-threatening sepsis. “We were told he might not make it through the night,” says Nicola. “He was in hospital six weeks, home just in time for Christmas. We knew we had to push on with a transplant, knowing Freya was a very eager match. “A big question was if he could withstand chemotherapy to clear his existing bone marrow.”
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Jakob was diagnosed with Mirage syndrome aged just six-months-old
Freya after her bone marrow surgeryThe family isolated for two weeks before Jakob went to the RVI’s Great Northern Children’s Hospital in March for chemo. Freya had fluid taken from her spine to put stem cells in his blood, to regenerate his bone marrow with hers. Nicola and accounts manager Mark, 43, were the only visitors Jakob was allowed in the Bubble Ward – with Freya giving him thumbs-ups via a window.
“He was kept in ultra-strict isolation for weeks while we prayed the transplant worked,” says Nicola. “It was torture, knowing any day we could get bad news.” They were aided by family support worker Jen of the Rainbow Trust children’s charity, which supports families caring for a seriously ill child, who they “can’t thank enough”. Finally, on July 14, Jakob rang the end-of-treatment bell.
Nicola says: “Bringing him home was incredible. I’ll never forget the moment Jakob could give Freya his first hug since the transplant – the grin on his face. They’re laughing and playing like nothing’s happened. As Freya says, they’re one and the same now. There’s a little bit of her in him which will be there forever.”
While Jakob does not have a prognosis, the family is confident. “We were told he might never walk or talk but he’s sitting up, yabbering away,” says Nicola. “Hearing him squeal with delight every time Freya walks in the room is incredible. His platelet levels are up, he can live normally with a shunt and there’s no sign of brain damage.” Newcastle upon Tyne Hospitals NHS Foundation Trust said: “We are so pleased Jakob is doing well.”
■ Donate to the Rainbow Trust at rainbowtrust.org.uk