What if on Christmas Eve, it’s not sleigh bells we hear, but the alarms on Bella’s dialysis machine?
Six-year-old Bella is desperate to live a dialysis-free life, having been diagnosed with kidney disease four years ago. Her mum, Nathalie, describes what life is like for their family, as Bella continues to wait on the transplant list for a new kidney this Christmas.
A message from Bella's mum, Nathalie
Christmas is coming and my children can’t wait. They’re so excited! But to be honest, I’m really worried about it. Since Bella became ill, December is always filled with anxiety for me.
What if Bella gets an infection in her dialysis port and ends up spending Christmas in hospital? What if she is ill and misses her nativity play which she’s so looking forward to? What if on Christmas Eve, it’s not sleigh bells we hear, but the alarms on Bella’s dialysis machine?
Kidney disease at Christmas
Last Christmas, like most other parents, I went to my child’s nativity play at school. I sat in the hall watching little Bella dressed up as the Christmas star with a big smile on her face. She’s six-years-old and she absolutely loves Christmas. Joy just beamed out of her. She really was like a little shining star.
I felt so proud of her. But at the same time, I felt so sad. Bella had to go through so much to get on the stage that day.
While her school friends were fast asleep at 5am, Bella was in hospital connected to a dialysis machine. While her friends were having their breakfast, my husband Mike was giving her the pills she needs to survive. While her friends were putting on their school uniforms, Bella was putting out her arm for the nurses to take her daily blood samples. And while her friends were putting on their shoes and heading out of the door to school, Mike and Bella were in the car, doing the 90-minute drive home, hoping that the traffic wouldn’t make her late for the nativity play she’d been looking forward to for so long.
Life for Bella and our family has totally changed since she was diagnosed with a form of kidney disease - called glomerulonephritis. She’s not been able to live the same life as other children her age, she’s missed out on so much, and she has spent so much time in hospital. It’s been absolutely heartbreaking, and often very frightening.
Waiting for a transplant
When Bella’s kidneys failed, my husband, Mike, and I assumed that we’d be able to donate one of our kidneys. We’re desperate to try and give her a normal, happy childhood. So, we were devastated when we found out that neither of us was a match. It’s been one of the hardest parts of this whole journey.
As a parent all you want to do is help your child. To not be able to do that, you feel so helpless. Since then, so many friends and family members have put themselves forward for testing to be a kidney donor. It’s been amazing to see the love for Bella. But despite all our efforts and searching and hoping, we haven’t found a compatible kidney just yet.
Bella can’t wait till she does get a new kidney. She’s started asking “Have you found me a kidney yet? When’s my kidney coming?” I tell her we just need to find the very best kidney for her. It could be ten months or five years, we just don’t know how long we’ll have to wait. Every extra month means that Bella has missed out on so much more.
Life for a child with kidney disease
Having spent so much time in hospital over the past four years, Bella has fallen behind academically and hasn’t had the same opportunities to develop socially.
Since Mike and I were given training to manage Bella’s dialysis at home, our house has become a hospital. He often ends up sleeping on her floor, because the dialysis machine alarms go off and she’s really scared.
What she goes through on a day-to-day-basis is just ridiculous. From first thing in the morning when we unplug her from her dialysis machine to last thing at night when we plug her back in and read her a story, it’s non-stop for Bella.
She is at that age now where she is noticing she is different. It really hurts to see her unable to do so many of the “normal” things that other children do. She’s so brave and loves life, so it’s heartbreaking that dialysis causes her to be so tired and prevents her joining in with sports, like swimming or rugby, and being able to enjoy the same foods as her friends.
We try to focus on what Bella can do. Her favourite thing is ballet, and she loves to dance. But it won’t be until she has a kidney transplant that life will really open up for her. When that happens, we hope Bella will be able to fully pursue her passions.
How a transplant could transform our lives
The day Bella gets her new kidney, I imagine the years of tension and worry will just drop away. I know a transplant isn’t a cure, but it would transform her life. She’d be able to do swimming lessons, play rugby like her brother, and hockey like her dad. She’d be able to run as fast as the other children and grow a little bit taller! She’d be able to eat the same food as everyone else. We’ll be able to get on a plane and go on holiday. If she didn’t have this blooming kidney disease, she’d be doing everything!
Bella will always have kidney disease, but once the transplant comes, we’ll be able to live a more normal life. She will need medication, but she won’t need a machine keeping her going. Our house won’t need to be a hospital, and we won’t need to be nurses. We’ll just be able to breathe again.
Supporting research at Christmas
Trying to navigate your child through this is really hard and I don’t think people realise the extent of what families go through. We hope sharing Bella’s story will help people see the severity of kidney disease and the importance of research.
The more research that is done, the more it will help Bella and other children as they get older. For example, if researchers can find a way to make kidney transplants more available, maybe less people will need dialysis. I hope Bella’s life is a lot simpler than it has been during her first six years.
It would be amazing if you could help make more research possible. So, if you can, please will you make a special Christmas donation to Kidney Research UK?
Thank you for your support.