A critical role in vital research – Teigan's story

At the age of one, Teigan’s kidneys began to fail and she was rushed into intensive care. Seven months later, she was diagnosed with an immunodeficiency. With more conventional treatments deemed too risky, experts at Great Ormond Street Hospital (GOSH) suggested that Teigan take part in a pioneering gene therapy trial.

Teigan came to GOSH from her home in Scotland when she was three years old. She’d been diagnosed with severe combined immunodeficiency, which meant that her immune system didn’t work properly.

“The first memory I have is a sad one. I was in the back of an ambulance in Scotland being rushed to hospital in Glasgow when my kidneys had failed. I still remember it clearly – I could see my dad driving behind me. The doctors said I could’ve died in a few hours.”

Life on an isolation ward

Teigan was on Robin Ward at GOSH, where patients with immune problems are cared for if they need to be in isolation. “I remember the staff being very lovely. There were a lot of play specialists, who were great fun – they used to get me books that I liked and teach me how to do arts and crafts.”

As a result of her condition, Teigan was at a high risk of infection, so spent long periods in isolation. “I was in this room with big glass windows, talking to my family using an intercom because they weren’t allowed in. To keep myself entertained, I drew loads of pictures – and I mean loads! It was just draw, draw, draw. I completed covered the glass walls of my isolation unit.”

Taking on the trial

Through consultation with specialists at GOSH, Teigan and her family decide to join a gene therapy trial – as she grew, the prescribed drugs would be less effective, so her health would have been increasingly at risk.

“When I first started receiving the treatment, I was casually like ‘oh, I’m just having gene therapy, la-dee-da-dee-da’. Nowadays, I really can’t believe how much I went through and why I wasn’t crying all the time. I look back at myself in the hospital and I am always surprised at how much I was able to go through at such a young age. My doctors were a huge help.

“All my hair had fallen out and I was bald. I got quite self-conscious and sensitive about it and wore a bandana. But I’ve got loads of hair now though, and my pet bird, Rio, uses it as a nest.”

There were many moments during her stay that Teigan looks back on fondly, including the filming of the BBC documentary Great Ormond Street, in which she appeared with her doctor, Professor Bobby Gaspar. “The boom microphone was just sitting awkwardly in front of me and with all the attention on me discussing a serious subject, I found it too much to handle and couldn’t stop laughing. Maybe at that point I had spent too long in isolation!”

Part of a family

Today, Teigan returns to GOSH once every six months for a checkup. “Getting to London from Scotland is always quite long. I usually just sleep, and luckily, when getting the train down, we get firstclass tickets!”

Coming to GOSH is no longer a sad experience either – with many familiar faces to say hello to. “When I think about Bobby, I think of one of my best friends – he’s one of the reasons I’m alive today. A lot of people who know what I’ve been through ask me if I found hospital scary. I just tell them that because of the people and the atmosphere at GOSH, it wasn’t. A lot of people still think I’m really brave, but it’s nothing like that. I was just really well taken care of by everyone who worked there – I felt like part of a family who really cared for me.”

Taking part in clinical trials is a real challenge – but Teigan is proud to have taken part in important research that will help others. “My advice to anyone else on a similar clinical trial would be to stay strong – always remember that what you’re going through is for the greater good.”

Learn more

To find out more about clinical trials and the important role that patients play in research at GOSH, visit our hospital website.