Five-year-old Freya Frost has become a true hero after saving her baby brother’s life. Little Jakob Frost was born with a rare condition called Mirage Syndrome, affecting only one in a million people. Jakob’s only hope was finding a perfect bone marrow donor for a transplant. Unfortunately, his parents, Nicola and Mark, were not a match. But luckily, Freya stepped in and proved to be the perfect fit.
When she heard she could be his donor and help him, Freya didn’t hesitate, says Nicola, tearfully. Freya herself chimes in, saying, I love my little brother, I’d do anything for him. He’s amazing.
Despite Freya being an ideal donor, doctors still gave Jakob only a 30% chance of survival. Jakob was born prematurely at 37 weeks and initially seemed to be doing fine. However, after being discharged at 11 weeks, his condition worsened, leading to his diagnosis of Mirage Syndrome at just six months old.
Jakob’s journey has not been easy. He has had to receive feeding through a nasal tube, undergo surgery to drain fluid from his brain, and receive regular transfusions. Then, last November, he developed life-threatening sepsis, leaving his family fearing the worst.
Knowing a bone marrow transplant was crucial, the family prepared for the procedure. Freya, eager to help her brother, underwent surgery to have her stem cells put into Jakob’s blood. Both children underwent a strict isolation period, with Freya giving Jakob thumbs-ups through a window.
It was torture, knowing any day we could get bad news, says Nicola. However, their prayers were answered on July 14 when Jakob rang the end-of-treatment bell.
Bringing Jakob home was an incredible moment for the family. Nicola recalls the heartwarming scene when Jakob hugged Freya for the first time since the transplant, their laughter filling the room. As Freya puts it, they are now one and the same, forever connected.
While Jakob’s prognosis is uncertain, the family remains hopeful. Despite initial concerns that he might never walk or talk, Jakob is progressing well. He can sit up, babble away, and shows no signs of brain damage. His platelet levels have improved, and he can live a relatively normal life with the aid of a shunt.
The Newcastle upon Tyne Hospitals NHS Foundation Trust is pleased with Jakob’s progress, and the family is grateful for the support they received from the Rainbow Trust children’s charity. Jakob’s story is a testament to the brave and selfless act of sisterly love by Freya, who truly proved to be her brother’s hero.
To donate to the Rainbow Trust and support other families in need, visit rainbowtrust.org.uk.
