After contracting a life-threatening infection following surgery to his skull in October 2012, Stanley was admitted to Great Ormond Street Hospital (GOSH) in December, where he remained over Christmas.
Thanks to the parent accommodation at GOSH, mum Claire was able to stay close to her son.
Day to day
Stanley was born with Crouzon syndrome, a rare genetic condition that caused the flat plates of bone in his skull to fuse together, distorting the shape of his head and affecting his airway. Since then, Stanley has experienced 30 ambulance trips and more than 20 operations and procedures – the majority of those on his skull and airway were performed at GOSH.
“You have to live day to day, not knowing what will happen next,” says Claire.
“Part of his condition is that his bones are fused together. To create room for his brain to grow they need do something called a ‘vault expansion’, where they crack the skull from ear to ear and then put springs on the back of his skull to try to open up the back of his head.
“Stanley had this procedure back in 2012 and within four weeks at home he became really unwell. A week before Christmas, Stanley was rushed back to GOSH and he was kept in for a month over Christmas with a severe infection.
“We were on Koala ward the whole time. They removed all the infected area and did what they could to make a head shape out of what was left. It saved his life and that’s the most important thing.”
During their stay at GOSH, Claire also had a daughter, Harriet, who was six at the time, and Freddy, who was just a baby.
“Freddy and Harriet stayed in the parent accommodation for the whole Christmas period, including Christmas Day. Harriet still remembers it as one of her best times. The nurses let her dress up as a nurse for the day and took her under their wing. She still remembers it fondly.”
“The parent accommodation was a lifeline. I couldn’t imagine what we would have done without it. It meant our whole family was together. We could come away from the hospital, cook a meal, watch a bit of TV and try to have a little bit of normality for the kids.
“Stanley was really well looked after – the nurses were an absolute godsend. Stanley has been in for so many operations that he has a bond with the nurses. They are all fantastic. If I had to be away for whatever reason I knew they were looking after him."
Though Christmas 2016 is just around the corner, Claire is still just trying to take one day at a time.
“I haven’t thought about Christmas this year yet. Stanley has another MRI scan on 20 December to check the brain so fingers crossed. We’ll have Christmas at home – we get up to chaos in the morning and you really appreciate home when you’ve been through some hard times.”
Together at Christmas
We are the official charity partner of Sainsbury’s this Christmas. Check out the official Christmas ad and head to your nearest Sainsbury’s store to buy specially-created gingerbread men and film animation kits – 50p from every gingerbread man and £2 from every animation kit will go to Great Ormond Street Hospital Children’s Charity. You can also make a donation at the till when you shop in store – just tell the cashier how much you’d like to give.
All the money raised by Sainsbury’s will go towards providing accommodation for families of children at the hospital. Visit the Sainsbury’s website for more information.
With your support, Great Ormond Street Hospital can help more children like Stanley and their families. Donate directly to Great Ormond Street Hospital Children’s Charity and help raise money for:
- Rebuilding and refurbishment
- Children and family support