Another kidney donor has come forward to help Addison Behrndt, a six-year-old Sudbury girl who has Sensenbrenner Syndrome, an extremely rare disease that has affected her organs.
This is more than welcome news for Addison, who’s had to bear a series of setbacks on her way to a kidney transplant. The best part for the little fighter? Chocolate milk.
“She is looking forward to her new kidney so she can drink as much fluid as she wants,” Addison’s grandmother, Andrea Behrndt, told Sudbury.com As Addison is only allowed 900 millilitres of fluid per day (slightly less than four cups) and cannot process potassium or phosphate, her diet is limited. “She can't wait to have as much chocolate milk as she can and many other things she enjoys like bananas and smoothies,” she said.
Though a donor for Addison came forward in late January, Addison’s kidney’s began to shut down in February before the surgery could happen and her blood pressure rose significantly. She was not up to the strain of the transplant and so doctors felt it would be best to remove her kidneys and put her on dialysis. This would help get her into better shape for a now-postponed transplant surgery. However, in May, Addison suffered a gastro-intestinal bleed and because she needed a blood transfusion, her body grew antibodies and she was no longer compatible with the donor.
But Addison now has another chance.
“Addi has a transplant date of Oct. 14,” said Berhndt. “She is doing well since being home from Sick Kids in June.”
Behrndt said Addison’s blood pressure has normalized for a chronic kidney disease patient and she is handling her dialysis well.
“She has had some minor hiccups but all in all she is fantastic going into transplant,” she aid. “The doctors and her team at Sick Kids are happy with her progress and are just trying really hard to keep her in tip top shape going into the transplant.”
The transplant will not be easy, not for Addison, and not for her family. “We are preparing once again to temporarily relocate to Toronto where Addi and her mom Emma will be living anywhere from 3-6 months depending on how things go.”
Behrndt, also known as “Annie” to her granddaughter, will spend a month with them after surgery and then commute from Sudbury on weekends.
It’s a costly and highly necessary endeavour, and that’s why a family friend began a GoFundMe page for Addison, with $16,385 raised of a $50,000 goal. There is also the An Army for Addison Facebook group, and you may recognize Addison from Sudbury.com’s Acts of Kindness. You can see that special surprise here.
The money raised will help cover the cost of these expenses, as well as the unexpected needs that cropped up during Addison’s early-year setbacks.
Behrndt said that the family can’t thank the donor enough. “We are very grateful for our donor, a stranger in our community who has unselfishly chosen to share a kidney with our sweet girl. Words cannot express our gratitude and we will never be able to thank them enough.”
And though they are all “scared, nervous and excited,” Behrndt said they are very much looking forward to Addison having a more usual childhood.
“We are looking forward to having our fun-loving, full-of-life little Addi back to 100 per cent so she can live a normal life of a 6-year-old, or as close to normal as possible,” she said.