Five-year-old Sudbury girl with rare condition searches for a kidney donor

Young Sudbury girl searching for kidney donor Tonight, we have a story of now, a young girl in the Sudbury area who needs a kidney donor. CTV's Molly Frommer has the story.

Sudbury — Many living donor program across the country were put on hold due to COVID, but recently they’ve been trying to catch up on the backlog of transplant operations.

A young girl in the Sudbury area was born with a rare disease and is now in need of a kidney.

Five-year-old Addison is full of life and spends most of her days playing with toys. She was born with Sensenbrenner Syndrome, which affects many parts of the body.

Addison’s mother, Emma Behrndt, told CTV that Addison also has Craniosynostosis from her syndrome and was told by doctors that Addison was not going to make it.

“I spent my whole pregnancy that I was going to have her and I was going to wrap her in a blanket and wait for her to pass and say goodbye to her,” said Behrndt. "But then I had her and she ended up breathing by herself and the nurses, all of a sudden a week later, said, 'you can take her home' and we found out she had this very rare syndrome and it affects her stature so she’s shorter than she should be and very tiny."

Just more than a year ago, Addison had a regular check up and doctors found her blood pressure was higher than it should be.

Kidney failure is a side-effect

Research shows there are roughly only 40 reported cases world wide. One of the side-effects of the condition is kidney failure.

“I think the doctors and us were hoping we could maybe get the blood pressure under control and that the kidneys would maybe settle down a bit and we could probably wait out a transplant for a little bit longer, but that’s obviously not the case,” said Andrea Behrndt, Addison’s Grandmother. “She’s 15 per cent functioning right now with multiple medications not bringing down her blood pressure.”

The Kidney Transplant Program based out of Toronto says each year, between 500 and 600 people come forward to donate. The director of the program, Dr. Joseph Kim says, after evaluation, not all people are medically cleared to donate.

“It’s a very rigorous process to make sure that potential donors are healthy enough to donate one kidney and live a very healthy and full lives with the remaining kidney,” said Kim. “So the number of people who come forward is much greater than the number of people who actually qualify. For the last several years, we’ve been doing anywhere from about 60 to 70 transplants a year from living donors alone.”

Children as young as two are able to receive adult kidneys, which is why the Behrndt family is looking for people who might be willing to go through the process and, from there, doctors will find Addison’s best match.