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Grande Prairie youngster suffering from rare kidney disease

The family of a young girl from Grande Prairie is searching for a donor match or any support, as she battles a rare kidney disease. Paizley was diagnosed with Congenital Nephrotic Syndrome several years ago.

It is a rare kidney disease, where her kidneys leak out protein. Her body needs that protein so it can properly get rid of fluid. Paizley’s school, St. Catherine Catholic School in Grande Prairie, is collecting gift cards and cash donations. She says people can reach out to her via email and will accept any other contributions to help them in this situation. For more information, visit the FightForPaizleyandBentley group on Facebook.

Paizley’s family of 6 has been with her every step of the way since she was admitted to Stollery Children’s Hospital in Edmonton. Paizley’s younger brother, Bentley, lives with his mother and unfortunately also has the same kidney disease.

Her mother, Michelle Welch, says financially and emotionally, the situation has made for an extremely difficult four and a half years. She adds to make matters worse, there is no known medication that will put it into remission.

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“As of about March this year, that’s where things kind of went off the rails. She’s not growing, she has failed to thrive and they wanted to place a g-tube. At that time we placed one of the dialysis catheters in Paizley called a peritoneal catheter, knowing that she will be on dialysis probably by summer. Unfortunately, throughout the months of the summer, she had frequent infections in her catheters, so they had to remove the catheter in October and put the hemodialysis line in, which was our last resort,” she says.

“It just hasn’t been working either, we’re on our third one right now, and we’re hoping that the third time is the charm.”

Paizley’s big brother and sister, Mason, and Saydey, have been staying with their grandparents in Beaverlodge. Welch is thankful that she has the support of her family and friends. Paizley’s father, Nathan, has been running back and forth between Edmonton and Grande Prairie.

Welch says Bentley still requires albumin infusions twice a week as Paizley did for the last four and a half years. Paizley and Bentley had been getting their albumin infusions from home for the last two and a half years. It was just better for Bentley to be at home with his mother.

“He loves the hospital, but it’s not mom. Mom does the best. He’s only four and a half so he’s just more comfortable with me. It’s just hard being split up. Having half of us here and half of us there. It’s hard finding a place big enough for all of us that we can afford,” Welch says.

“As of right now we don’t have a match. We could be here for months, there’s really no telling how long that will take.”

Welch says Paizley will be at Stollery in Edmonton until they find a transplant.

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