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Spirited nine-year-old Tilly Riches recently enjoyed a superhero day at The Nook. It proved a fitting theme, given that’s exactly how her mum describes her.
Tilly has kidney disease and receives care at East Anglia’s Children’s Hospices’ (EACH) Norfolk base.
Her condition only came to light when she was six, in 2022 – the start of a journey that led to her being diagnosed with Group A Streptococcus (GBS). That, in turn, caused her kidney problems.
She now has haemodialysis, which has made her condition more stable, but the family still have to make three trips a week to the specialist hospital in Nottingham.
It’s a lot to contend with – but Tilly takes it in her stride and loves spending time at The Nook.
“I’ve always thought of a hospice as somewhere you go to spend your last living days,” admits mum Terri.
“That’s why I was so scared and upset when we were first referred to EACH.
“I was terrified to think of my daughter being in that kind of environment and was reluctant, to say the least.
“I only went along because my husband persuaded me to give it a chance.
“As it turned out, The Nook couldn’t have been more different and was nothing like I expected. It’s like a palace and somewhere we all feel at ease.
“The staff are amazing, and it means the world to have somewhere I can leave Tilly.
“She feels safe and secure there and gets to have fun and be a child, without having to worry about the things she can’t do.
“I know she’s happy and being looked after, and I know I can ring at any time to make sure everything’s OK.”
Tilly was a happy, healthy baby – albeit more susceptive to colds and bugs than other youngsters her age – and her condition only came to light three years ago.
In the beginning, it was one thing after another – hand, foot and mouth disease, followed by a stomach bug and then hand, foot and mouth disease again.
In October 2022, Terri and Buster took their daughter to A&E.
They were initially told it was scarlet fever, but it turned out to be Group Strep A.
“She really didn’t look well and had sunken eyes,” said Terri.
“We were scared but also angry, given that it hadn’t been diagnosed sooner.
“It was only because we protested so much that they did the blood tests that detected the problem.
“I begged them and said if they didn’t do something, I might lose my baby girl.
“It was terrifying when we got the results. People were rushing in and out and they told us her organs were shutting down.
“She was moved into isolation and had to have blood tests every two hours.
“Tilly’s haemoglobin and platelets reading was 13, when it should have been much, much higher.
“Had it been three levels lower, it could have led to internal bleeding, and we might have lost her. It doesn’t bear thinking about.
“No parent should ever have to see their child suffering. It’s heartbreaking, and I’d take her pain on in a heartbeat, if I could. I wish that were possible.
“I certainly have my down times and often feel quite numb but try and save it for when Tilly’s asleep. My tears come when she’s in bed.
“I feel like a robot most of the time, going back and forward to hospital and always getting ready for the next appointment.
“However, I’m lucky to have a great husband and fabulous family and friends, plus the incredible support we receive from EACH.”
As a result of the Group Strep A diagnosis, Tilly’s liver was failing. She spent the next fortnight at West Suffolk Hospital, before being transferred to a specialist unit in Nottingham.
After two weeks there, she came out in the skin rash HLH, and she was eventually diagnosed with kidney disease on 19th October 2022.
She had a Peritoneal Dialysis (PD) line fitted and spent that Christmas and New Year in hospital in Nottingham.
The PD line stayed in place for the next couple of years, until a haemodialysis line was fitted this March.
Thankfully, things are now more stable and staunch Norwich City fan Tilly is on the waiting list for a kidney transplant. She had one operation planned, but the kidney was needed by someone else, so the wait for a perfect match continues.
“Tilly’s my world, and I love her so much,” said Terri, 40.
“Like any child her age, she has her moments and can drive me crazy at times.
“I love being with her more than anything in the world, though, and wish we could be together 24/7.
“She’s such a sweet girl, and it’s amazing how she’s come out of her shell since being diagnosed, mainly because of all the conversations and interactions she’s had with doctors, nurses and adults generally.
“She used to be timid and scared of the world, petrified of speaking to anyone.
“There were only a handful of people she’d communicate with – us, her grandparents and her Auntie Emma.
“Now she’s completely different and she’s great with other children, too. If she sees another little one at hospital, she’ll get down on her hands and knees and tell them everything’s going to be OK.
“She’s like a mini mum to them and she’s such a fabulous ray of light. I couldn’t be prouder. She’s a warrior and my little superhero.”
Published in August 2025
