Toddler Joseph faces a difficult Christmas
Last year, the Turkentines enjoyed a normal, happy family Christmas, celebrating the wonder of the festive season with their son Joseph, then aged two. Fast forward a year, and everything looks very different.
Mum Sara, 34, who works in HR, explains, “Joseph had always been small for his age, then we noticed he had started putting on some weight after Christmas and assumed he was going to have a growth spurt.
“Then one morning in early March he woke up with his eyes completely swollen. He looked like he’d been beaten up. Obviously, our first thought was that he had an allergy, and that was the GP’s diagnosis too. There was nothing to suggest it might be to do with his kidneys.”
But a few days later, Sara noticed Joseph’s testicles were extremely swollen. Alarm bells began ringing, although initially doctors suspected a UTI.
Sara says, “Two days later, his scrotum had swollen to the size of an adult’s fist. It was terrifying. We rushed him to A&E, where he was diagnosed with nephrotic syndrome (NS), showing his kidneys weren’t working properly.”
Young children often recover quite quickly after a course of steroids, but four weeks later tests showed Joseph still had high levels of protein in his urine. The family were referred to a specialist kidney clinic 100 miles away from their home in Nottingham, and Joseph was diagnosed with diffuse meningeal sclerosis, a rare condition which had caused the NS. He needed dialysis, and the family were told it was likely Joseph would need a transplant.
“It was so hard”
“I was told the news when I was on my own, due to coronavirus regulations, and then had to drive 100 miles home knowing what I knew,” says Sara. “It was so hard.”
This regime of driving up and down the motorway four times a week continued, with Sara and her husband Matt taking it in turns to take Joseph. “It’s been a nightmare trying to keep him entertained, but he’s been so good,” she says. “The nurses are brilliant but some days are exhausting and you’ve exhausted everything you can think of. Luckily, we can now do peritoneal dialysis at home.”
Currently, Sara is being tested to see if she could be a suitable donor for her son, although her husband was ruled out after the first set of tests. “In December, we’ll see the surgeon who will decide if they want to operate on him at his current size, but we are going to try some growth hormones temporarily,” she says.
“I’d rather I donate the kidney than get one from someone else, because he’s my child. I’m not scared or upset for me, but I’m sad that I wouldn’t be able to be with him before his operation. I’d even be in a different hospital, and it would be a few days before I could see him or my husband which will be hard.”
Making Christmas special
It’s unlikely surgery will take place until next year, so at the moment Sara is focusing on making Christmas as special as it possibly can be.
“Every Christmas with Joseph is special, but we’ve had a really difficult year and it will be nice to get together with family and say goodbye to it. Instead we want to celebrate and think of all the positive things that are going to be coming next year, hopefully.”
Sara is determined to support Kidney Research UK after watching her son undergo dialysis.
Kidney disease can affect anyone
“I thought that kidney disease only affected older people but this has opened my eyes. Haemodialysis machines are not built for children and the process puts a lot of stress on their bodies. I’d love to see more research done into making the haemodialysis experience better for children.
“We had to travel hundreds of miles in order for him to have treatment, and luckily my employer has been supportive. I can’t imagine what it would be like if you lost your job because your child has to be taken to a hospital miles away four times a week. Children’s renal units in local hospitals would make a big difference.”
Read more about people living with kidney disease
