Boy, 5, with rare immune disorder lives in isolation and can't go to school

A mum has told how she has to keep her five-year-old son in isolation to stop him from getting infections that could kill him.

Emily Chaney, 36, has been guarding little Jacob all his life after he was born with a rare immune disorder, haemophagocytic lymphohistiocytosis (HLH).

HLH causes the body to react inappropriately to a "trigger" which usually comes from an infection of some kind.

Specialised white blood cells become over-activated, causing severe inflammation and damage to tissues such as the liver, spleen and bone marrow.

In his short life, Jacob has had two bone marrow transplants to combat the disorder, which doctors say is "rarer than winning the lottery."

Emily, from Bishop's Stortford, says she and her husband James first noticed something wasn't right with Jacob when he was a toddler and began suffering from high body temperatures.

Emily and James are waiting to find out if Jacob's second transplant was a success (PA Real Life)

Jacob has spent much of his life in hospital (PA Real Life)

For more of the news you care about straight to your inbox, sign up for one of our daily newsletters here

She 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 Great Ormond Street 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."

After Jacob was diagnosed doctors told his parents they needed to perform a bone marrow transplant to protect him from fatal consequences if he contracted an infection.

“There’s not much known about the disorder, especially in this country, which is quite daunting to be told when you’re faced with your child having this diagnosis," she said.

Sadly, despite undergoing a gruelling transplant in April 2019, it was unsuccessful, leaving little Jacob vulnerable.

Emily 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.”

In December 2021 the tot had a second transplant, in the hope it would stick.

Emily says despite his health problems, Jacob is "always happy" (PA Real Life)

His favourite TV characters are Sooty and Sweep (PA Real Life)

Emily said: “He was in hospital over Christmas, but came home at the end of January.

“It’s early days yet. The first 100 days after the transplant are crucial for determining whether the procedure has been a success.”

Jacob's condition makes him so vulnerable to infections, he's been in isolation his entire life.

Emily 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."

Despite suffering several health complications, Jacob loves to play and is "always happy," according to his mum.

Worried her son was missing out on key life events, Emily got in touch with the Spread a Smile charity - which supports critically and terminally ill children and their families by providing entertainment, treats and activities to them and their families while in hospital.

The charity recently paid Jacob a visit in his room at Great Ormond Street Hospital to paint his favourite TV characters, Sooty and Sweep, on his window.

Emily said: “It was a bit of fun for him and the painted window trains make hospitals seem less scary for the children.

“The charity came to the hospital after he was first diagnosed. He was really unwell that day and they were playing music and he started dancing and clapping to it.

“It really made an impact."

While the family waits to see if Jacob's latest transplant has been a success, she's grateful for the charity's efforts in cheering him up while he lives in isolation.

She said: “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.”

Spread a Smile is launching an urgent appeal to raise £500,000 to support even more children across the UK. To support the appeal, click here