'The idea of isolation was never foreign to me' Jack Crick and his battle with X-SKID

Freedom is few and far between for Jack Crick. Thanks to his condition, he has had to become acustomed to a sheltered life. This is his story.

In 2020 when COVID shut down the world, everyone 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 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 peoples mind. Now in a post-covid world, we have had a small glimpse into the life he has had to endure for 20 years. “Everyone else was starting to understand what me and my parents had been through,” says Jack.

Jack Crick, 20, is a Psychology student at Leicester University. He was born with X-SCID, a genetic disorder where the patients immune system is effectively useless. A usual common cold or an infection which would usually be a minor inconvience to most, can be potentially life threatninig 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 majority of family's spend 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.

While having these antibody replacement jabs, he would sit on his nan's lap and be given a toy, usually Thomas The Tank Engine, to keep him distrated. Despite it not being particulary glamours, he remebered these memories quite fondly.

Since he was a child, his family has always instilled the habit of excessive hygiene and cleanliness, much to his annoyance at times. “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.”

“It was the first indication, I guess, that it was real, that there was a point of me having this medication every week.”

As he grew up, he struggled with the discrepancies that came with having a non-visable condition. After all, in his eyes he was the same as everyone else his age. “Well, why am I here? (Hospital's) 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?” says Jack

“Why was I not allowed to go out with my friends? Why do I have to factor this in? (Hospital check ups and antibody replacement injections) It was very annoying.”

However, he soon started to realise how important these check ups were. They wern't just a way to stop him being with his friends, they were the difference between life and death.

His first reality check came when he was ten, where he had three weeks off school due to the pupils having live vaccine jabs. “It was tough since I had to be homeschooled 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. But despite these difficulties, thanks to the gene therapy, he was still able to live an ordinary life. “I had a relatively normal childhood, we went to the park and to zoo’s and did all the things a family does because of its amazing treatment,” says Jack.

Luckily this 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 work, I thought maybe after a few weeks it'll die down, I'll go back,” says Jack, which of course wasn’t the case.

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 foresable, and exams were being cancelled,  he wasn't sure wether he was going to be able to experince it.

After many hard and long conversations, Jack, despite his family's best wishes, decided to come 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 and got really ill and I was in intensive care my parents wouldn't forgive themselves,” says Jack, who luckily was ok. “It was nice you went straight into your normal life like nothing had changed, everyone treating you the same.”

 "No one knew what was going to happen to me or if I would survive.”

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,” says Jack.

For him and his family, it wasn't out of the ordinary. The world were just starting to devlop habits that had been instilled in his family for his whole life.

Of course he was still worried about re-entering society once lockdown restrictions lifted, but thanks to the procedures his college had in place, he was less worried 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.

“It 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.”

It was tense in his house, no one could process what was happening. All they could do was hope.

Luckily for his family, he survived. Not just survived, but was barley affected it 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 for Jack, he 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, well perfect for me. I was so fortunate and so lucky to be alive. This life is a bonus in a way,”  says Jack 

“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.