The pressures of isolation back in the 2020 lockdown were a shock to most people’s systems, for Jack Crick it was just a normal occurrence. He tells feature writer Carter Smith about the struggles having a life-threatening condition caused and continues to cause.
In 2020 when Covid shut down the world, most people had to become accustomed to a new way of living. 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 Crick, it was nothing out of the ordinary.
“The idea of isolation wasn’t ever foreign to me or my family,” says Jack, who has lived a semi-permanent life of isolation. Lockdown wasn’t anything new to him.
While most people before 2020 walked around without fear, Jack had to be cautious about things that never crossed most people’s minds. Now in a post-Covid world, we have had a small glimpse into the life he has had to endure for 21 years. “Everyone else was starting to understand what me and my parents had been through,” says Jack.
The 21-year-old is a Psychology masters student at De Montfort University. He was born with X-linked severe combined immunodeficiency (X-SCID), a genetic disorder where the patient’s immune system is effectively useless. A common cold or an infection which would usually be a minor inconvenience to most, can be potentially life-threatening for Jack.
However, thanks to life-saving gene therapy, he was able to survive – but living with this condition has been a daily challenge.
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. “I don’t remember the harrowing things that my whole family went through.”
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.
Most Sunday’s, Jack’s would sit on his nan’s lap while having the antibody replacement jabs. To keep him distracted, he would be given a Thomas The Tank Engine toy, which he would play with while the needles pierced his skin. 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.”
As he grew up, he struggled with the discrepancies that came with having a non-visible condition. After all, in his eyes, he was the same as everyone else his age. “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?” recalls Jack.
“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.”
However, he soon started to realise how important these checkups were. They weren’t just a way to stop him from being with his friends, they were the difference between life and death.
His first reality check came when he was ten when he had three weeks off school due to the pupils having live vaccine jabs. “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.”
From that point, he was a lot more understanding towards the injections and the worries from his parents.
Luckily for Jack, the gene therapy helped him live a somewhat ordinary life. “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.
That normality continued for Jack. He made friends, he had relationships, and he did most things a normal teenage boy would do.
But that would all come to a halt in 2020, as Covid forced its way into our lives. “I stopped going to school and I was sent school work, I thought maybe after a few weeks it’ll die down, I’ll go back,” says Jack. This didn’t happen.
From the moment you enter secondary school, you mentally count down the days until you finally get to leave. You imagine how euphoric it will feel. No more exams, no more lessons, just freedom.
Jack was no different, but when the news broke that school would be stopping for the foreseeable, and exams were being cancelled, he wasn’t sure whether he was going to be able to experience this very feeling.
After many hard and long conversations, Jack, despite his family’s best wishes, decided to go in on the last day for one last goodbye. He wasn’t sure when he would see anyone again, he didn’t want to miss it.
“I remember being really on the fence about it myself. If I got it [Covid] and got really ill and I was in intensive care, my parents wouldn’t forgive themselves,” says Jack. Luckily, he was ok. “It was nice you went straight into your normal life like nothing had changed, everyone treating you the same as they did before.”
As the world descended into madness, Jack watched as everyone started to experience what he had become accustomed to. “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.
For him and his family, it wasn’t out of the ordinary. The world was just starting to develop habits that had been instilled in his family for his whole life.
He was still worried about re-entering society once lockdown restrictions were lifted, but thanks to the procedures his college had in place, he was less concerned about returning. “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.”
But the world works in mysterious and often cruel ways. Despite Jack and his family taking all precautions, he managed to get 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.”
Luckily for his family, he survived. Not just survived, but was barely 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, but Jack still feels very 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.
Jack’s mum’s story
While Jack struggles to recall the daunting experiences he had when he was a baby, his mum, Deb Crick, 45, remembers every last heartbreaking detail.
“When I found out he had X-SKID, I didn’t know whether he would live or die. The doctors weren’t sure if Jack would make it either,” she says.
The bad news 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 distressed by all that happened.
There was some relief at last for Deb when she was told there was a brand new therapy. “I was relieved when we were told about gene therapy, we finally had some hope. 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 said.
“It was a very scary time for us all, I was constantly worried and anxious all the time. We are still so grateful that it worked out,” Deb says.
