Dec. 11 is supposed to bring the ultimate early Christmas gift for young Addison Behrndt in the form of a new kidney.
Six-year-old Addi has Sensenbrenner Syndrome, an extremely rare disease that has affected her organs.
“We are hoping the third time’s the charm,” said Addi’s grandmother, Andrea Behrndt.
Addi’s kidney transplant was supposed to happen in January this year. It didn’t happen. and due to medical reasons, she was no longer compatible with the donor who was willing to give Addi a kidney.
They found a second donor, though, and the transplant was supposed to take place in October. However, it was postponed as Addi was experiencing heart issues at the time, her mom said.
Now, the transplant has been finalized for Dec. 11.
“We’re really hoping this can go forward and get a new kidney in her, because we’re starting to see issues with things like her heart from her blood pressure being so high, resulting in longer sessions of dialysis,” said Andrea. “She is now on dialysis anywhere from 13 hours to 15 hours a night, and it’s really starting to affect her quality of life.”
Andrea said her granddaughter is still the same little girl she has been through all of the troubles she is experiencing.
“Addi is still Addi, still funny, still silly, still so Addi,” she said.
Addi is heading to Sick Kids in Toronto on Nov. 30 for pre-admission and to ensure the echocardiogram is clear, Andrea said. Then she will go back on Dec. 9. They will do a COVID screening, then admit her.
After the transplant on Dec. 11, Addi will spend a few weeks in the hospital.
“So we’re looking at Christmas as Sick Kids,” said Andrea. “ That’s fine. We need a kidney. Nothing else matters. This has been going on for a year now, and it’s just time.”
After that, they will have to stay in Toronto anywhere from three to six month, depending on how Addi’s body reacts to the new kidney, she said.
“It’s still a long road ahead of us,” she said.
The family will likely stay in a hotel and at Ronald McDonald House.
“We just found out last week that the transplant was going to go ahead on Dec. 11, so we have to figure out accommodations,” she said.
She said there is a little bit of money left over from the GoFundMe campaign, Help Addi and her family through her transplant, which has raised more than $17,000. However, Andrea said she doesn't know if it’s going to be enough to cover their expenses, and is hopeful Sudburians can once again help out by donating.
“It’s stressful,” she said.
Andrea and Addi are also mourning the loss of one of Addi’s biggest supporters.
Addi's great grandmother, Norma, Andrea’s mother, suddenly passed away two weeks ago. She fell and broke her hip, then passed away nine days later.
“Addi is just devastated, she really wanted my mom to be here for the transplant,” Andrea said. “It's just been a rough few months. A rough year, but the last few months have been really bad.”
Last year, Sudbury.com surprised Addi as one of the recipients of our 12 Days of Christmas. To check out that video, click here.You can follow Addison's journey by following Army for Addison on Facebook.