GOSH dad Chris takes on RBC Race for the Kids

Aurora’s mum, Victoria, was seriously unwell with COVID-19 when Aurora was born. Straight after the birth, she had to return to a COVID-19 ward while Aurora stayed in a special baby unit.

After three weeks, Chris was finally able to collect Aurora. Victoria came out of hospital about three to four days later.

“It was a crazy time, to say the least,” Chris says.

After some time at home, Aurora had a health check. Everything seemed fine, but measurements showed her head was larger than average.

An MRI scan revealed she has a condition called Chiari malformation type 1, which means part of her brain extends into the spinal canal.

“That was when we were referred to Great Ormond Street Hospital (GOSH)," says Chris.

While at GOSH, Aurora’s family received some unexpected news. Her consultant thought Aurora also had a genetic condition.

Tests showed that he was right; she had a mutation of the gene PTEN.

"(It) affects one in 250,000 people (and) essentially stops the body being able to fight off tumours and cancer," Chris says.

“She has a really high risk of getting cancer, so now gets tested for cancer once a year for the rest of her life," he explains. "On the more positive side of things, the side effects from the mutation of the gene are very wide ranging, and she’s on the better end of it luckily.”

The reason Aurora's consultant tested her for the PTEN mutation was because of the size of her head. But an enlarged head can be a symptom of many things.

“If it wasn’t for the consultant at GOSH who had a hunch that she could have a genetic condition then we wouldn’t have found out until much later when she may have contracted cancer. What a hunch!” Chris says.

Aurora now has regular check-ups at GOSH for the PTEN mutation.

The hospital is also monitoring Aurora’s Chiari malformation, as it gives her bad headaches.

"...Sometimes you can see her grabbing her head,” Chris says.

“They don’t like to operate on Chiari malformations as they’re so close to the spinal cord, so the doctor said he’d rather we just gave her Calpol to ease symptoms.”

A Chiari malformation can affect walking and cause sleep apnoea. Because of this, Aurora also has physiotherapy at GOSH and has also taken part in sleep studies.

"The staff were so welcoming and made the stay as pleasant as it could be. They talked me though every step during the process,” Aurora's mum Victoria says.

Due to COVID-19 restrictions, only one parent could attend some of Aurora's appointments. For Victoria, this was "daunting" – as there was so much information to take in – but she always found GOSH staff supportive.

“The staff could not have been better in explaining the details of what the conditions were and did so a way that meant I could replay the information to Chris who could not attend," she says.

This October, Chris will be taking part in GOSH Charity’s annual family fun run RBC Race for the Kids. For the first time since 2019, the event will be taking place in London’s Hyde Park.

Chris will be taking part as a way to give back to GOSH, as well as raise awareness around PTEN.

“Great Ormond Street Hospital is an amazing hospital that looks after kids from all over the world," he says. "If I can do a little bit to help then hopefully I can make a small difference."

Chris's aunt also worked at GOSH for 25 years. "(That) coupled with the care my daughter is receiving at GOSH, made me think that signing up was the right thing to do,” he says. “... Not mentioning the fact I need to get fitter!”

With a couple of months to go, Chris has already raised almost £2,000!

“I just posted something on Facebook and friends and family have donated,” he says. He also hopes to send it round at work soon too. “People have been really generous so far.”

Aurora and Victoria will be there on the day to cheer Chris on.

Chris describes Aurora as “the happiest kid you’ve ever seen”.

"She’s a bit cheeky at times, but you wouldn’t want it any other way!” he says.

“Her brother and sister have been amazing with her. Her sister Lila is like a nanny – she carries her round and plays with her. Aurora gets up in the morning and runs straight into Lila’s bedroom to wake her up. We’re all really close.

“I’d just like her to live a normal life and not let her conditions get her down. We’re a positive family so we’ll all help her through it.”