Aisha's story

7 Feb 2024, noon

Patient Aisha smiling

Aisha was diagnosed with Crohn’s disease, a long-term condition where the gut becomes inflamed, when she was four years old.

Now 15, Aisha has been coming to GOSH ever since. Here she shares her journey so far.

Managing symptoms

"My symptoms started when I was just two years old. As I got older, I was in lots of pain and constantly going to the toilet.

"When I experience a flare up, I can be off school or in hospital for long periods of time. I feel really fatigued and it’s hard to do anything.

"I’m currently on total parenteral nutrition, which means I'm given nutrients through infusion, and I can’t eat as my gut needs to heal itself. This means I have to plan my days around this and need to be careful with my central line.

"During the pandemic, I was an inpatient at GOSH, and we stayed for the first three months of lockdown. That was tough as my family and friends couldn’t visit.

"I also had my stoma bag fitted during that time and had surgery to remove my large intestine the following year.

"Over the years, I’ve learnt how to manage my disease in my own way. I know to make sure that I don’t overdo it, and I change and empty my stoma bag when I need to. But it majorly impacts my life, and I have lots of anxiety in public regarding where the nearest toilets are and worrying about my bag or feeding tube leaking."

Memories of GOSH

"Following my diagnosis, the first thing I remember of GOSH was a Play worker by my side. I was trying my best not to take medicine because it tasted so bad, but somehow, she managed to get me to take it.

"The Play team [which is fully funded by GOSH Charity] is amazing. Whenever I’m an inpatient, they’ll come in every single day to make sure I have something to do.

"I remember I was given teddy bears, and I absolutely loved the therapy dogs. My mum wants to take our dog to GOSH and get him trained as one, but he’s a bit crazy at the moment!"

Aisha smiling holding a mixing bowl

Home for Christmas

"I stayed at GOSH for the whole run up to Christmas before leaving on Christmas Eve. Every day in December is magical, because the staff bring fun onto the wards and make it feel really Christmassy.

"I managed to get home for Christmas Day, but when I returned to GOSH the following week, the Play team came around with a huge sack of presents for me and my sister! They didn’t want us to miss out."

Life today

"I currently visit GOSH every eight weeks for injections, as well as other times in-between for check-ups.

"Sometimes I have to stay in hospital for the whole day. But the Play team, music therapists and GOSH Arts team [which is partly funded by GOSH Charity] are always there to keep me occupied.

"Everyone has their own way of dealing with things. At school, I like to be honest about my condition because it makes it a lot easier, and I know that everyone around me will be understanding. I think that if people judge, then that’s on them.

"I’m thinking about two career choices: either something medicine related or something down the design route, because I like textiles. I’m still deciding which way to go, but since coming to GOSH I’ve always wanted to go into medicine."

A GOSH family

"GOSH Charity means a lot to me, as without support from donors and fundraisers, essential things like the Play team wouldn’t exist.

"We’re like one big family on the ward; I know it’s cliché to say, but it’s true. When I’m going back and forth from hospital, just knowing they are there makes everything feel less isolating and more familiar.

"The Children’s Hospital School at GOSH is amazing. I was able to learn maths, English and science every day, and the teachers stayed in touch with my school at home to ensure I was keeping up. It gave me a sense of normality and made me feel better knowing I could keep on top of my work.

"To other children just starting on their journey at GOSH, I’d say have an open mind. Everyone has their own way of dealing with things; some find it easier to be open about their condition, and others prefer to be more conservative. But the staff at GOSH are there for you either way, and they’ll make your time there a lot easier."

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