Ready to run – Phoebe’s RBC Race for the Kids

Last year, Great Ormond Street Hospital (GOSH) patient Phoebe completed the RBC Race for the Kids with her family. Her mum, Jo, says it was a fantastic feeling.

“Entering the race as a family and crossing the finish line together, with the crowd cheering, felt like a wonderful achievement," says mum Jo.

Eight-year-old Phoebe did a lot of the race on her dad's shoulders. But this year, Phoebe – who has a genetic condition called 22q11 syndrome – is aiming for an even more remarkable achievement as she hopes to complete the 5k fun run in Hyde Park on 7 October under her own steam.

Amazing strides

“Until recently, it was inconceivable that Phoebe could walk as far as 5k," says Jo. "She’s been getting some practice by walking a similar distance on a Beaver hike. 

“She’s looking forward to challenging herself again and even trying to run some of the way. If Phoebe manages the whole distance, it will be a massive achievement for her."

The start of Phoebe’s journey

At eight weeks old, Phoebe was struggling to put on weight and doctors detected a heart murmur during a check-up. Over the next few years, Phoebe continued to have problems.

After three years of misdiagnosis, the family were referred to GOSH. “Phoebe was my third child so I knew something was wrong, and there were frequent trips to the GP and local hospital,” says Jo. “I felt there must be an underlying medical condition that connected her problems but couldn’t get any answers.”

Finally, a diagnosis

22q11 syndrome, also known as DiGeorge syndrome or velo cardiofacial syndrome, is the most common genetic syndrome after Down's syndrome.

“At GOSH, we were in the room for literally five minutes and the consultant said: ‘I think she has 22q syndrome.’ With those words, everything changed for us.”

The syndrome affects every child differently, and Phoebe has needed three major surgeries at GOSH – two operations for cleft palate and one for a hole in her heart.

Coming to GOSH

“Phoebe gets so excited about coming to GOSH. She absolutely adores the hospital, and that’s really remarkable when you think about it.”

Despite her condition, Phoebe loves swimming and gymnastics and plays football for the local team. “Every time someone talks about the mobility issues associated with 22q syndrome, I laugh, as Phoebe will throw herself into everything,” says Jo. “Although, unfortunately, she does suffer the consequences later with her tired muscles, it still doesn’t stop her.”

Family support at the finish line

Cheering Phoebe to the finish line at the RBC Race for the Kids will be Jo and dad Rob, Phoebe’s 11-year-old brother Thomas, nine-year-old sister Willow, and Labrador Ooma.

Phoebe had wanted to take part in the race for a few years, but she had to wait to grow bigger and stronger. “We went last year and the kids loved it,” says Jo. We ended up staying the whole day because they were having so much fun.”

Jo says Phoebe has such a zest for life that she never lets anything stand in her way: “She’s so courageous. After her heart operation, we got home and I immediately had to stop her from going to climb a tree.

“She’s funny and full of life. Perhaps because she’s had some struggles from a young age, she takes things in her stride.”.

Get involved

Join Phoebe and her family at RBC Race for the Kids at Hyde Park on Saturday 7 October – sign up now at gosh.org/raceforthekids.