Ferris Backmeyer is preparing to undergo dialysis while she waits to grow before she's eligible for a kidney transplant.

Image Credit: SUBMITTED/Backmeyer family

KAMLOOPS - A local family has spent the past month at Vancouver's Ronald McDonald house while their 14-month-old daughter battles a rare syndrome.

Ferris Backmeyer started experiencing kidney issues just a few weeks after she was born, her mother Lindsey Backmeyer says.

"It was terrifying, obviously," Backmeyer says. "(The syndrome) sounds terrible on paper when you Google it. It sounds awful... I guess the hardest part was seeing it on paper and then seeing how Ferris was doing. She just didn’t look the part. I guess maybe in the beginning I thought they were wrong because she was just doing so good and growing, and eating, and meeting some milestones."

Although Ferris wasn't formally diagnosed with Mainzer-Saldino syndrome until a couple of months ago, Backmeyer says a geneticist was able to informally diagnose Ferris soon after she began experiencing symptoms. Mainzer-Saldino Syndrome is a rare disorder that mostly affects the bones and kidneys, according to the U.S. National Library of Medicine.

It's not known if Ferris's misshapen bones, which are shaped like cones, Backmeyer says, will have any affect on her mobility in the future. As for Ferris's organs, a new kidney wouldn't be affected by the syndrome, Backmeyer says. It would come with its own cells which would function properly. It's not like an autoimmune disease.

Backmeyer says Ferris is one of 20 to 30 people who have ever been diagnosed with the disorder.

The syndrome can also cause vision loss, something that hasn't affected Ferris at this point, Backmeyer says.

Approximately one month ago, Ferris was admitted to hospital in Kamloops after she began suffering from kidney failure, Backmeyer says. A few days later, she was transferred to Children's Hospital in Vancouver. Now Backmeyer, her husband Pat, their six-year-old daughter Tavia and four-year-old daughter Ksenia are staying at the Ronald McDonald house while Ferris prepares for dialysis.

"We’re just in the process of starting (dialysis)," Backmeyer says. "She just had a dialysis catheter placed and they're hoping to wait two weeks from placement before we start. My husband and I are just undergoing training so we can hopefully take her home and do dialysis at home."

Backmeyer says it likely won't be until at least mid-April before Ferris is allowed to come home. She adds that when Ferris was first diagnosed, things were much scarier and the family didn't know what to expect.

Ksenia, Ferris, and Tavia Backmeyer.

Image Credit: SUBMITTED/Backmeyer family

"I think this admission is terrible but we’re expecting it a bit more, rather than thinking we had a healthy baby," Backmeyer says. "We’re expecting challenges and there's obviously a lot of complications that could arise, but I'm not going to think about them so much and I'm just hoping that she tolerates dialysis well and that she’ll be a candidate for a transplant when she gets bigger but she’s too little right now."

Ferris has to grow longer and heavier in order to be a candidate for a kidney transplant, and until then she will be on dialysis.

On top of dialysis, Backmeyer says one-fifth of Ferris's liquid consumption consists of medications.

"The pharmacy boxes we had delivered before we got to come to Ronald McDonald house with her, they were like two big brown boxes of (medications)," she says. "It's a bit intimidating and time consuming, literally just the drawing up and giving of (medications), and washing all the syringes and doing it all over again the next day."

Backmeyer has found a Facebook group that helps support parents of children who have been diagnosed with Mainzer-Saldino Syndrome, and although there are only eight patients that are part of the group, she's glad she can connect with people who know what she and her family are going through. She says they are the only ones in Canada who are a part of that group.

Tavia and Ksenia are with their parents in Vancouver, which Backmeyer says can be a lot to handle, but keeps their spirits up.

"We have two other kids that are super busy," she says. "You can’t just be depressed all the time. You know, Ferris looks really good despite everything, so it makes it a lot easier for us. She doesn’t look as bad as her numbers do, thankfully." 

The Backmeyers have also spent the past month off of work. Lindsey is a respiratory therapist at Royal Inland Hospital. Pat will be taking a leave from work so he can take care of Ferris once she's ready to return home.

"We’ve had a lot of community supoprt already," Backmeyer says. "We have quite the village behind our family so we do have a lot of family and friends that have helped out."

The Backmeyer family.

Image Credit: SUBMITTED/Backmeyer family

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