Joseph is still waiting for his first kidney transplant.

We’re working to create a world where he won’t need to wait again.

Joseph Turkentine when he was a bay asleep with a toy fox

Joseph is waiting for his first kidney transplant.

We’re working to create a world where he won’t need to wait again.

Will you make a gift to help us?

We want to do everything we can to transform treatments for people living with kidney disease. Including researchers like Professor Mike Nicholson, whose current research project could change young Joseph’s future.

Make a gift today

Parents Sara and Matt with children Annabelle and Joseph at a wedding.

Joseph's story.

In the first three years of their son’s life, Sara and Matt had been through some truly devastating experiences, coming close to losing him. And yet somehow finding the hope and strength together to take each day as it comes.

26 months old, August 2020

Epilepsy

Joseph was just 26 months old when he had a seizure. He was diagnosed with epilepsy and put on several medications to try and control his seizures.

26 months old, August 2020

33 months old, March 2021

Unusual symptoms

Joseph woke up with really puffy, swollen eyes. Assuming it was an allergy he was given antihistamines by the doctor. That was on the Wednesday, and then on the Saturday his parents were changing his nappy and noticed that his scrotum had swollen. They took him to A&E at Addenbrooke’s Hospital in Cambridge and were given antibiotics and told to come back if things get worse. By the Monday it has swollen to the size of an orange. Back at the hospital doctors did a urine sample and took his blood pressure.

33 months old, March 2021

Nephrotic syndrome diagnosis

It meant something was wrong with Joseph's kidneys, they were leaking too much protein into the blood, and this was damaging them. The family were transferred to specialists at Nottingham hospital, a two-hour drive from their home, for further tests.

33 months old, March 2021

33 months, March 2021

Denys-Drash syndrome diagnosis

The doctors thought he may have a rare condition which meant he might have tumours in his kidneys. Joseph had genetic testing to confirm the diagnosis. After a 6 week wait, the results came back negative for Denys-Drash syndrome.

33 months, March 2021

35 months old, May 2021

Membranoproliferative glomerulonephritis diagnosis

Joseph's diagnosis has changed several times. The latest diagnosis is membranoproliferative glomerulonephritis (MPGN). An autoimmune condition which means his immune system attacks his kidneys. He's having more tests to see if there is a link between his epilepsy and kidney problems.

35 months old, May 2021

2 years 11 months old, May-August 2021

Starting dialysis

Joseph’s kidney function shut down a lot quicker than expected and he started haemodialysis (following surgery to create an access point to connect him with the machine). For 10 weeks the family did the two-hour trip to Nottingham four times a week for haemodialysis. Dialysis also made managing Joseph’s epilepsy much more complicated. In August 2021 Joseph had another surgery to create the access so he could began having peritoneal dialysis (PD) at home.

2 years 11 months old, May-August 2021

3 years 9 months old, March 2022

Waiting for a transplant

Dad Matt was tested first to see if he could donate his kidney, but unfortunately his kidney function wasn’t quite strong enough. Thankfully, when mum Sara was tested, she was a match. They had a transplant date set for 8 March 2022, but things didn't go to plan.

3 years 9 months old, March 2022

Still waiting for a transplant

At 9:30pm the night before the operation, the consultant said the operation couldn't go ahead due to Joseph's liver function enzyme being elevated. The planning process begins all over again for the family.

3 years 9 months old, March 2022

Joseph with his older sister Annabelle

“Annabelle’s very bright for six. She asks a lot of questions. When she asked, ‘Will Joseph ever go to hospital and not come back?’, that was the one that hurt the most.” Mum, Sara Turkentine.

Donated kidneys last on average 20 years.

This means that Joseph will probably need several transplant operations in his lifetime. Next time he won’t have the option of a transplant from his mum.

We’re working to create a future where no one has to go on dialysis while they wait for a donor kidney.

Make a gift today

What if we could create universal donor kidneys?

Imagine a future where no one has to wait for a kidney transplant

A kidney donor and recipient must have compatible blood groups, or the kidney will be rejected immediately. The applies to blood transfusions, too.
There are four blood groups: O, A, B and AB. O is a ‘universal’ group, meaning it can be used for people of any blood group. A, B and AB can only be used for people with those specific blood types.
What makes the blood groups different and affects their compatibility is the type of sugars on the surface of the blood cells. All of the blood types have ‘H’ sugars on the surface. But A, B and AB blood types also have sugars unique to them. It’s the unique sugars on A, B and AB that cause problems in kidney donation.
Professor Mike Nicholson and his team at the University of Cambridge have discovered a way to use proteins that act as molecular scissors to ‘snip off’ the extra sugars from red blood cells. This turns an A, B or AB blood sample into a universal O sample.
With our funding, the team are investigating if it is possible to perform the same process on kidney tissue. If it’s a success, this could revolutionise the future of kidney transplantation.

Help fund research like Professor Nicholson's

Professor Mike Nicholson, Performing normothermic perfusion