Little Jacob was born with an incredibly rare disease that makes him very susceptible to infections. Because of this, he is forced to live in a protective bubble.

Emily Chaney, 36, tells the Mirror how she has had to protect her son, Jacob, since he was born. Indeed, the little boy now 5 years old came into the world with a rare immune disease, hemophagocytic lymphohistiocytosis. This causes the body to react inappropriately to a trigger, which usually stems from some infection. In such cases, the white blood cells become overactivated, causing severe inflammation and damage to tissues such as the liver, spleen and bone marrow. From an early age, little Jacob has suffered the worst…

His rare disease forces him to live isolated from everyone

During his short life, Jacob has already undergone two bone marrow transplants to fight his disease. However, Emily assures her, everything is going well during her pregnancy and after the birth of the little boy. “It wasn’t until Jacob was a little over a year old that he developed a fever that I just couldn’t bring down,” the mum points out. “After a week in a local hospital, Jacob was transferred to Great Ormond Street Hospital, where we discovered he had a very rare immune disorder.” Jacob’s condition makes him so vulnerable to infections that he has had to be isolated all his life. “He never went to school, so hopefully this time the transplant will work and he can enjoy some normality as a child.”

Worried that her son would miss key life events, Emily contacted the charity Spread a Smile – which supports seriously ill children by providing entertainment while in hospital. The charity recently visited Jacob in his room at Great Ormond Street Hospital to paint his favorite TV characters on his window. “It was fun for him, and the decorated windows make hospitals less scary for kids,” says Emily. For the mother, these activities really boost the morale of the little boy who lives in isolation.

TESTIMONY Suffering from a rare disorder, my 5-year-old son lives isolated and has never been to school ©

Emily
Emily
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