Daniel's Christmas at GOSH
26 Oct 2023, 1:46 p.m.
Four-year-old Daniel spent the festive season at home for the first time in 2022, after spending his first three Christmases in hospital.
His mum, Georgie, shares their experience of Christmas at GOSH.
“My mother’s instinct knew something was wrong”
When Daniel was three weeks old, he started passing a lot of blood, and his family knew something wasn’t right. They took him to their local hospital, where doctors discovered he had sepsis.
A few weeks later he seemed to be improving. Doctors thought he had a milk allergy, which explained both the bleeding and the sepsis.
“We were discharged and sent on our way,” Georgie explains. “But my mother’s instinct knew that something was still wrong, and the doctors agreed to do further testing.”
When Daniel reached 12 weeks old, doctors confirmed that he had Wiskott-Aldrich syndrome, a rare genetic immunodeficiency. His family were told he would need a bone marrow transplant.
“This was when our journey with GOSH began.”
Life on Robin Ward
After receiving his bone marrow transplant, Daniel recovered in isolation for nine weeks, before being discharged in June 2020.
“Initially, Daniel’s transplant at GOSH went smoothly,” Georgie says. “He was supported so well by the team on Robin Ward.”
But unfortunately, two months later, Daniel became very ill. It was apparent that the transplant had failed, and the family had to prepare for a second bone marrow transplant in December 2021.
“It was really difficult, but everyone welcomed us back as though we were part of the family,” Georgie recalls.
“All the staff at GOSH remembered Daniel and we knew everyone on the ward already, which made a huge difference.”
After the second transplant, Daniel spent 12 weeks in isolation at GOSH, followed by more isolation at home.
“During his time in hospital, we had visits from the Play team every day, which was great. Their visits helped to break the day up and gave me the opportunity to sit outside in the fresh air.”
“All the staff were wearing special Christmassy things" - A GOSH Christmas
Daniel and his family were in hospital for Christmas that year.
“My husband stayed with Daniel so I could be with our other child, Holly, because Daniel wasn’t well enough for her to be there at that point,” Georgie says.
“It was difficult to be away from my baby, as it’s not really Christmas unless you’re all together.”
During this time, Daniel was very unwell, but GOSH staff helped to bring the magic of Christmas onto the wards. They were a comforting presence for Georgie and her family.
“It was a lovely atmosphere. Daniel received so many presents from GOSH Charity that the Play team organised for him, which was so lovely, but he just wasn’t well enough to enjoy them.
“I managed to visit GOSH with Holly around Christmas and there were so many decorations up, everyone made an extra effort, and it was as cheery as it could be.
“All the staff were wearing special Christmassy things, and Daniel’s dad even dressed up as Santa. He went around the wards to say hello to everyone, and I think Daniel was the only child who was a bit scared of Father Christmas! But all the other children enjoyed it.”
Daniel was discharged a few weeks after Christmas. He has been monitored by hospital staff closely ever since.
“We worked with multiple teams at GOSH and they have all been equally great,” Georgie says.
“Daniel is a little monkey! He has such an amazing personality, an enthusiasm for life, and he just gets on with it.
“When we walk into the supermarket he marvels and says, 'Wow!’. He thinks it’s the most amazing place in the world.”
First Christmas at home
Daniel spent his first Christmas at home in 2022, when he was three years old.
It was the first Christmas that he was well enough to enjoy, and the family had lots of fun things planned.
“Being able to spend Christmas at home was amazing,” Georgie says. “It was Daniel’s first Christmas outside of hospital, and there was such a lovely build up.
“Just being together was amazing. It’s not about what’s underneath the Christmas tree, it’s about who’s around it, and this Christmas was when I really understood that.”
Take part in our Christmas Raffle and help seriously ill children at GOSH. As well as helping children like Daniel, you could be in with a chance of winning £10,000 plus many other prizes.
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