Ferris Backmeyer, 4, was born with Mainzer-Saldino syndrome and is in need of a kidney donor.
Image Credit: SUBMITTED/ Lindsey Backmeyer
September 07, 2021 - 8:02 AM
A family in Kamloops has received devastating news about their four-year-old who has spent the majority of her life on dialysis waiting for a kidney.
Lindsey Backmeyer said her daughter Ferris was born with a rare genetic disorder called Mainzer-Saldino syndrome. The syndrome affects her kidneys, liver and bones.
An antibody test taken earlier this week shows that Ferris has become highly sensitive and her immune system is not functioning due to very high antibodies that developed since her first failed kidney transplant in March.
“It terrifies me in the season of a pandemic of a respiratory virus that my child doesn't have any protection against anything," Lindsey said. “They are going to increase immunosuppression to try and prevent her antibodies from getting even higher. Her future is so incredibly uncertain. I have never felt more confident in our decisions to making memories our number one priority. Everything needs to shift and her quality of life will come above everything else.”
Lindsey said the goal is to get a kidney transplant for Ferris, but that the odds are not in her favour. She requires a young, female kidney of someone with type O or B blood. She currently has no kidney function at all and hasn't for over three years.
“From my understanding there is a fancy calculation that looks at all the organs that were donated in the past five years across Canada and all age groups,” Backmeyer said. “One percent of those would have been a match for Ferris. I feel shattered and it’s hard to breath.”
At this point there are no plans for Ferris to be listed on a deceased donor registry, which means that her second chance of a transplant will rely on a live donor.
"She is on no list at all," Lindsey said. "I’m trying to remain hopeful that the hero she desperately needs will be found. A successful kidney transplant means life for our sweet girl."
Lindsey continues to spread the word about her daughter's need for a kidney on social media.
"It’s just been so incredibly overwhelming and the constant feelings of fight or flight are wearing me down," she said. "Finding this kidney is like finding a needle in a haystack but I believe it is out there. It’s so important for us to really embrace where we are at right now because the reality of our situation is that this is likely the ‘good’, and I won't stop trying to keep it this way."
If you think you can help Ferris call the Living Donor Program at St. Paul's Hospital in Vancouver toll free at 1-877-922-9822 or contact Lindsey Backmeyer on Facebook here.
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