A young Sudbury girl still desperately needs a kidney donation after unexpected complications arose when her kidneys were removed in February.
Addison Behrndt, 6, has Sensenbrenner Syndrome, an extremely rare disease that has affected her organs.
Sudbury.com brought you the story of Addison in December last year when she was featured as a recipient of our 12 Days of Kindness campaign.
In January, a match was found for Addison. The family travelled to Sick Kids Hospital on Jan. 24, but the transplant never happened.
“There have been multiple setbacks, and what we thought was going to be a smooth transplant journey has turned into a very bumpy roller coaster ride with no end in sight,” said Addison’s grandmother, Andrea Behrndt.
Addison suffered a gastro-intestinal bleed after having her kidneys removed in February, and because she needed a blood transfusion, her body grew antibodies and she was no longer compatible with her donor.
“So we lost our donor,” said Andrea.
She and Addison’s mother, Emma, learned to do peritoneal dialysis so that they could go home and wait for a kidney. After almost three months of being in Toronto, they were all able to return home on April 17.
The return was short-lived, though, only two days, in fact.
“Because of her super high blood pressure, she was airlifted back to Sick Kids on April 20,” said Andrea. “She was very sick and her blood pressure caused her to have multiple seizures.
“We thought through that week that things were controlled, but on April 24, she suffered another seizure at Sick Kids and she spent almost two weeks in the ICU.”
Addison, mom and grandma are still currently in hospital at Sick Kids. At this point, Addison is not even stable enough for transplant. She is on multiple blood-pressure medications and anti-seizure medications.
Andrea has taken a leave from work to be with Addison and Emma.
“We have been staying at a hotel because we really don't have a plan right now for Addison,” she said. “It is basically day by day.
“It's very stressful and exhausting, and we are not even close to transplant.”
She said work has started on another potential donor, but due to the COVID-19 pandemic, things won't move as quickly as they normally would.
“We should know by the end of the month if that person is a match or not,” said Andrea. “But right now it's all up in the air.”
A GoFundMe campaign continues to raise money for Addison and her family as they wait for a new kidney. The goal is to raise $50,000. To date, $13,930 has been raised.
“Addi has been a trooper through all of this,” said Andrea. “She is resilient and strong, and she keeps us all on our toes. She is a bit of a celebrity here on 6A at Sick Kids.”
They truly appreciate the funds being raised, she said.
“It's very helpful to know we have that money. As we all know, finances are stressful enough as it is, but when all this happens, it becomes more. We tried not to touch too much of that money until transplant, but this setback has caused us to need to use it.”