The 36-year-old mom said her 5-year-old son was reportedly born with a rare immune disorder and she has to keep him in isolation to stop him from getting infections that could be fatal for him. The boy is suffering from a rare immune disorder, haemophagocytic lymphohistiocytosis, the mother said. The rare disease can be difficult to diagnose, because many of the symptoms can mimic severe infections or other conditions.
According to the health officials, haemophagocytic lymphohistiocytosis or HLH reportedly causes the body to react inappropriately to a trigger which usually comes from an infection of some kind. Doctors said that the white blood cells then become over-activated, causing severe inflammation and damage to tissues such as the liver, spleen and bone marrow.
According to his mom, Emily Chaney,, the 5-year-old boy, Jacob Chaney,, already had two bone marrow transplants to combat the disorder, which doctors say is rarer than winning the lottery. The rare disease can be difficult to diagnose, because many of the symptoms can mimic severe infections or other conditions. Despite his diagnosis and health complications, the 5-year-old boy loves to play and is always happy, his parents told Mirror.
The mom also said that she first noticed something wasn’t right with her 5-year-old son when he was a toddler and began suffering from high body temperatures.
Emily reportedly said: “Everything had gone fine with the pregnancy and after the birth, all seemed well. It wasn’t until Jacob was just over a year old that he developed a temperature that I just couldn’t bring down.
After a week in a local hospital, Jacob was transferred to another hospital, where we found out that he had a very rare immune disorder. I didn’t know what to expect when we went to the hospital, but I certainly wasn’t prepared for how devastating the diagnosis would be.”
The doctors reportedly told the parents that they needed to perform a bone marrow transplant to protect him from fatal consequences if he contracted an infection.
Unfortunately, the boy underwent a bone marrow transplant in April 2019, but it was unsuccessful. The boy was still vulnerable, his parents said.
Emily reportedly said: “At first, it seemed to cure his condition, but every time he was checked, the amount of the donor’s bone marrow in Jacob’s body was decreasing. After three months, it was starting to become clear that the transplant wouldn’t be a success. It means that Jacob now relies on blood transfusions, sometimes weekly or monthly, depending on his health.”
The 5-year-old boy received his second transplant in December 2021. The boy’s parents said that the first 100 days after the transplant are crucial for determining whether the procedure has been a success, per reports.
Unfortunately, his condition makes him so vulnerable to infections and Jacob has been in isolation his entire life.
Emily reportedly said: “He’s never been to school, so I’m hopeful that this time the transplant will work and he’ll able to enjoy some normality in his childhood.
I’m really hopeful that Jacob’s latest transplant will see an end to the spells in hospital but, until then, I’m really grateful to the people who help to make them special for our little ones.”
And, despite his diagnosis and health complications, the 5-year-old boy loves to play and is always happy, his parents said.