Ricky Junior and Freya’s story
“GOSH is like a second home – they’ve done a lot for us. I feel safe here.”
Siblings Ricky Junior, seven, and his little sister Freya, five, live with cystic fibrosis, an inherited condition that can affect the lungs and digestive system.
They visit Great Ormond Street Hospital (GOSH) often, and their mum, Emily, says it’s like their second home.
“We come regularly as they need help clearing away mucus. They’re prone to colds and chest infections,” says Emily. “The treatment makes a big difference to them both. They spend a lot of time together in Hospital.
“The play team will regularly pop in to make sure they have fun things to do. They paint or bring toys for them to play with. They have Jenga and Lego and they always make sure they’re not bored. The team are really good and the kids love them.”
Ricky Junior’s diagnosis
When Emily was pregnant with Ricky Junior, she felt something was wrong. “He stopped moving. I went to the hospital and everything seemed fine, but it kept happening. They referred me for a scan at Kings Hospital in London. His bowel had ruptured, and they thought he might have cystic fibrosis (CF).
“When they sat us in a room and told us... I couldn’t take it all in. It felt awful.”
Right after Ricky Junior was born, prematurely at 32 weeks, he needed an operation to remove some of his bowel. “We were in Norfolk and Norwich in intensive care for three months.
“The first time we came to GOSH was for an emergency. Ricky Junior was around five months old and had bronchiolitis. He was taken straight to intensive care. He was there for two weeks and I was just crying all the time. He would have Physio every day for his chest. I used to sit him on my lap on a bouncy ball, and I had to bounce with him, and give him a nebulizer. That first year of his life we came to GOSH lots.”
Freya’s diagnosis
When Emily was pregnant with Freya, everything seemed well. Scans didn’t show the bright spots they’d seen with Ricky Junior, and they decided not to get extra tests. “It wasn’t going to change anything,” Emily explains. But when she was born, during nappy changes, Emily started to suspect Freya has CF too. And eventually, it was confirmed.
“A nurse called and told me she did have it I was gutted for her.”
Siblings support
Now the children are older, Emily thinks they’ve settled into their hospital routine more, and they lean on each other. “They have a lovely relationship,” she says. “They wind each other up, but they’re like best mates. I’ve been in once before with just Freya, when Ricky Junior didn’t need to come, and I think that was strange for her being on her own.”
They have physio together, and when the Play team visits, they paint and draw and do crafts together.
One big team
As well as loving their Play team visits, Freya and Ricky Junior keep up their learning at GOSH too, fitting in some school hours Monday to Friday. And the family had important support from the social work team too – the children aren’t allowed to share a room, because they’re more vulnerable to infections, and the risk of spreading germs to each other is high. That meant they needed more space at home.
“The social worker wrote me a letter explaining about CF, so we could get a house,” remembers Emily. “We work with loads of teams. We have a dietitian who helps with their diets and supplements. If they aren’t putting on enough weight she’ll come round and help with things to try.
“They physio twice a day, and they make it fun for them, they both really like it. And we have a consultant around each day to check on them.”
Accommodation was another very important part of the support the family got at GOSH – and that’s funded entirely by supporters like our lottery players.
“We used family accommodation at GOSH when we got taken into intensive care,” says Emily. “We were right opposite the Hospital. It made it all so much easier for us.
We would stay with him until really late, get some sleep and come straight back. It was so much less stressful than getting on the train... if anything had gone wrong you don’t have to rush too far.”