Boy, family fighting back

Malcolm Maday, 2, right, is seen with his parents, David and Bethany.

It’s one thing for adults to deal with medical conditions, and any parent will tell you they would rather take on such things themselves than watch their children go through it.

In those trying times, the support of family, friends and communities takes on a whole new level of importance.

On Saturday, there will be a benefit for young Malcolm Maday at Ghost Town Tavern in Imogene. Malcolm, who turned 2 years old in February, has been dealing with an extremely rare genetic condition and recently underwent a liver transplant.

Though recovering well, his parents David and Bethany face ongoing medical expenses as they continue to monitor his situation. Bethany shared Malcolm’s story.

“He was born a very happy, healthy little boy and we had no idea what the future would hold,” she said. “After he turned a year old, he ended up getting a high fever and he became very lethargic. We ended up taking him into the ER where he was transported to Children’s [hospital] in the Cities and it was discovered that his liver was failing.

“They didn’t really know why, but once they did some tests and found out it was his liver, they then transported him to the University of Minnesota Masonic Children’s Hospital because they specialize in livers. So he was there for about two weeks and he just got better. That’s the funny thing about livers, they can kind of restore themselves.”

From there, Bethany says the family returned home, not really knowing why the problem had occurred or what was causing it.

“We just knew that he was better so we were going home,” she said. “We were just supposed to monitor and see what happened, and about a month later it happened again and we went right back up to the Cities and they started doing all kinds of labs and tests.

“They found out it was a genetic condition,” she continued. “He has a mutation in the NBAS gene in his liver and it’s super rare. When we were told about it, we were told there was only one case study done in the entire world with only about 20 participants in it.”

She says the second episode followed the same pattern as the first. Malcolm was in the hospital for about two weeks and ended up recovering. Going forward, Bethany said the game plan was to not let him get a fever.

“Over the course of that year, we ended up going to be monitored and checked about 10 different times because he had fevers, but we were always kind of able to prevent it before it got into liver failure mode.

“Then in April [2019] right after Easter, he got a high fever and we went up to the Cities and his body just couldn’t fight it off. Within about 48 hours, his liver completely shut down and it started to affect his kidneys and they started to shut down. So he got put on the transplant list and received a transplant within another 48 hours.

“They were starting to look at David and I to see if we could donate just in case, but we we were fortunate enough that a liver came up. The surgery went well, and we were in the hospital about four weeks after, and then at the Ronald McDonald House for another three weeks after that.”

As mentioned previously, recovery is going well, especially for Malcolm.

“He is a resilient little kid,” she said. “It’s crazy how much they can handle, and it’s almost been harder on David and I in some sense. If you saw him right now you would not know that he’s been through anything; he’s running around and playing like normal.”

The benefit Saturday is being organized by Josh Thate, owner of Ghost Town Tavern. It will feature a meal and free will donation, silent auction from 5-7 p.m., with music by Mark Johnson to follow.

Bethany said that such help is greatly appreciated.

“We just want to thank everyone for all their support,” she said. “It’s crazy how a small town and small community can come together when you need them to. Just the love and prayers that people have been sending our way means so much to us.”