Jack Crick's battle with X-SCID 'The idea of isolation was never foreign to me'
Three-month-old Jack Crick is in intensive care at Great Ormond Street, London. He is on various medicines and he is hooked up on machinery which is helping him breathe.
He is dying, and no-one is sure if he will survive.
After his family suspected that he was ill, they took Jack to the Leicester Royal Infirmary. They tested for bronchiolitis. That wasn’t the case. They thought he had a hole in his heart. It wasn’t that either. They then tested for Cystic Fibrosis. It wasn’t a match.
They were soon told that he had an immune system problem and he was immediately rushed to Great Ormond Street Hospital. When they arrived, the doctors told his family he has X-linked severe combined immunodeficiency (X-SCID), a genetic disorder where the patient's immune system is effectively useless.
“When I found out he had X-SCID, I didn’t know whether he would live or die. The doctors weren't sure if Jack would make it either,” says Deb Crick, Jack's mother.
It didn’t stop there for the Crick family. “We were told that he needed a bone marrow transplant, but his sister wasn’t a match. We waited for a few weeks but no-one was a match. We were terrified,” she says, still clearly shaken by what happened.
As a last ditch attempt to keep him alive, the doctors suggested gene therapy.
“It was only a trial at the time and only a few kids had tried it. Some had developed Leukaemia, but we didn’t have a choice but to use it because we wanted him to live,” she says.
Despite all the odds, Jack survived.
In the news: Jack Crick in the Leicester Mercury after he survived
In the news: Jack Crick in the Leicester Mercury after he survived
X-SCID stats
How many cases
1 in 75,000
live births have X-SCID in 2024
Survival rate
One Year
is the usual life span of babies born with X-SCID
Who it affects?
80%
of X-SCID cases are males.
Survival rate with treatment
90%
of people who have been treated survive
The 21-year-old recently graduated from Leicester University and is now studying for his master's in health psychology at De Montfort University. Amidst all the adversity, Jack has been able to make a life for himself, although he has had to face many trials and tribulations along the way.
While the majority of families around him spent the early years of their baby's life teaching them the wonders of the world, Jack's family spent a year of his life not being able to leave the house. “My mum would have to stay at home all day and night while my dad worked and they would swap every two weeks,” recalls Jack, who has no recollection of the harrowing experiences his family had.
For nearly two decades, Jack has experienced the same weekend ritual - antibody replacement therapy to help with his compromised immune system. “It's worse because you know that no-one else your age, none of your friends at school, were doing it, so it hurt more from that respect,” he says.
Every Sunday, a young Jack would sit on his nan’s lap while having the antibody replacement jabs. His nan would often give him a Thomas the Tank Engine toy to keep him distracted from the long process. It’s not a particularly glamorous scene, but he remembers it quite fondly.
Much to his annoyance at the time, excessive hygiene and cleanliness is something which was instilled by his family since he was a small child. “When you come in from anywhere you wash your hands...it was something that was abundantly stressed to everyone all the time,” says Jack.
“I didn't really understand. It would be kind of annoying when you're trying to do normal things and it's excessive hygiene all the time.”
On the face of it, he was just like everyone else his age. So when all of his friends were outside playing without a care in the world, Jack struggled with the discrepancies that came with his non-visible condition.
“Well, why am I spending so much time at the hospital? I can run, and jump like everyone else, I can learn. I can do all of these things that all these other kids can do - so why am I here?” Jack recalls thinking.
“Why was I not allowed to go out with my friends? Why do I have to factor in these checkups and injections? It was very annoying.”
It would often lead to back and forths with his family. Jack, however, would get to understand his parents' worries, when he reached the age of ten.
That was when his first reality check came. Everyone in his primary school was having live vaccine jabs, which meant, because of the risk to him, he would have to have three weeks off school.
“It was tough since I had to be home-schooled for about a month,” he says.
“It was the first indication, I guess, that it was real, that there was a point of me having this medication every week.”
For everyone else, life went on as normal. For Jack, he had to watch weeks pass through his bedroom window. From that point onwards, he was a lot more understanding towards the injections and hygiene.
The bigger picture was always on Jack’s mind. He is very aware that many people born with the deficiency before him didn’t get the same life he was able to have, thanks to the gene therapy.
“I had a relatively normal childhood, we went to the park and to zoos and did all the things a family does – because of its amazing treatment,” he recalls.
For a while, his life remained fairly uninterrupted. He made friends, he had relationships, he was able to do the things that most normal teenage boys would do.
However, once COVID arrived when he was 16 years old, the realities of the life Jack has to live came back.
Most people had to become accustomed to a new way of living when lockdown restrictions were in place. Being isolated, focusing on hygiene and no longer being able to do certain activities was a challenge many of us couldn't handle.
For Jack, it was nothing out of the ordinary.
“The idea of isolation wasn't ever foreign to me or my family,” says Jack. Lockdown wasn't anything new to him.
As the world descended into madness, Jack watched as people started to get a glimpse into the life he had lived for 16 years. “It was strange to see how everyone reacted to it and how upset everyone was that their freedom had been ripped away from them,” Jack considers.
“Everyone else was starting to understand what me and my parents had been through,” says Jack.
For Jack, it was nothing out of the ordinary.
“The idea of isolation wasn't ever foreign to me or my family,” says Jack. Lockdown wasn't anything new to him.
The lingering feeling of what would happen once restrictions were lifted still played in the back of his mind. As college approached, COVID was still a present force, and one which he still wasn’t sure how much it affected him.
His worries were soon put to bed. “College was staggered, you'd clean your desk, you wouldn't touch anyone, you'd wash your hands, it was mirroring what I had done my whole life,” says Jack.
“The world caught up to what we were already doing.”
Out and about: Jack enjoying a meal
Out and about: Jack enjoying a meal
School time: Jack ready for his first day at secondary school
School time: Jack ready for his first day at secondary school
Goodbyes: Jack on his final day at school with his friends
Goodbyes: Jack on his final day at school with his friends
Despite Jack and his family taking all precautions, what they feared the most bacame reality. Jack got COVID. “We were panicked, you can't believe it in a way – you've been so safe,” he says.
It was a code red for his family, their worst nightmare was coming true.
“There was pandemonium in my house…everyone was tense and couldn't think about anything else other than me at that moment. It was crazy. No-one knew what was going to happen to me or if I would survive.”
They had endured scares before, but none felt quite as real as this. For the first time since being in the hospital as a baby, his family weren't sure what would happen. Once again, they were powerless.
After a week of worry, Jack was ok. He survived. He had not just survived, but he was hardly affected by it.
“Thankfully I was ok. My sense of smell and taste went entirely, and I had a runny nose and a cough. However, I'm always feeling like that,” says Jack, who still seems relieved about the situation now. “It was such a relief when I handled it, gene therapy worked.”
It would be easy to feel like the world was against him. After all, every time he believed he had turned a corner, there was another obstacle waiting for him. Yet, Jack still feels incredibly lucky for the life he continues to have.
“It's crazy that it just so happens I was born a few years after they discovered this treatment that was perfect for me. I was so fortunate and so lucky to be alive. This life is a bonus in a way,” says Jack, optimistically.
“Your life could be a lot worse and now I'm older, I'm a lot more in that camp. I can talk, eat, have friends, be in relationships, I can do everything every other human can do. Which is great, so that's the camp I stay in now,” says Jack, looking positively into the future, prepared for what life has in store for him next.
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