Running off Christmas with Team "Gigi's Joggers"

3 Dec 2020, 12:31 p.m.

GOSH patient Gigi out for a walk

Throughout January, GOSH mum Emily will be covering 31 miles on foot around her hometown in Devon to raise money for GOSH Charity. Below, she tells us about her personal connection to Great Ormond Street Hospital (GOSH). 

Emily's 14-month-old daughter, Gigi, has Greig cephalopolysyndactyly syndrome (GCPS), caused by “de novo” genetic alteration – which means it’s new and hasn’t been seen in the family before.

As part of the condition, Gigi was born with syndactyly (joined digits) as well as extra digits. It’s for this reason she is under the care of Dr Gill Smith and other members of the plastic surgery team at GOSH.

“The staff have been amazing,” Emily says. “Dr Smith and her team – including clinical nurse specialists Gaynor and Brigitte – are very special people. Their passion and determination to give the best care to their patients is evident.”

Gigi’s journey so far

To date, Gigi has undergone two bilateral surgeries as well as two dressing changes for her hands. She is due to have surgery on both of her feet when she is around 18 months old.

Taking Gigi to theatre for surgery was hard for Emily – and yet she found some solace in a moment shared with GOSH staff just beforehand.

“To calm Gigi, I sang a nursery rhyme, and everyone joined in without thinking,” she recalls. “This was a beautiful moment and made me feel so safe leaving her in their hands.

“Gigi took her Iggle Piggle toy with her for surgery and, when she returned, Iggle Piggle also had bandages – just like her. It was the sweetest!” she adds.

Following this surgery, Gigi couldn’t use either of her hands to play or eat. “But having amazing resources on the ward, as well as the sensory room and play therapist on hand with toys was amazing,” Emily says.

“Travelling up from Devon was made so much easier with the option of staying at the hospital’s family accommodation too.”

Two photos: First photo Gigi with bandages on and holding Iggle Piggle toy. Second photo Gigi outside playing without bandages

Giving back to GOSH

During COVID-19, the family have had to re-dress and bandage Gigi’s hands at home.

“The nurses talked me through how to do this and gave me the self-belief I needed at the time to do an amazing job.”

Right now, Gigi is fit and healthy and awaiting her next surgery at home.

"She has recovered so well and loves playing her little piano and reading story books now her hands and fingers are fixed!"

In January, Emily will be running 31 miles to raise money for GOSH Charity, as part of our festive virtual running challenge: Running off Christmas.

“I decided to sign up for Running off Christmas as a way to say thank you to the team at GOSH. They’ve undoubtedly already changed Gigi’s life, as she now has full mobility of her hands and can play!” Emily says.

“I plan to run around three miles, three times a week, although I am hoping to see if I can exceed the 31 miles over the month.”

Emily’s friends have joined the fundraiser, forming a team of 11 called “Gigi’s Joggers”.

“We hope to raise £2,000 as a team! I’ve already been astounded at the amount I’ve raised individually and as a team. People’s generosity has been amazing.”

Follow in Emily’s footsteps and sign up!