HARTFORD, S.D. (KELO) — Saturday, a brewery in Hartford will host a benefit to raise money and awareness of a rare disease affecting a child who has ties to the community.

Sara McFarland is originally from Hartford but now lives in Wisconsin. It was a process to figure out what was wrong with her little boy Landry, but after months of testing and perseverance, they finally have answers.

Landry Anderson is the son of McFarland and Ethan Anderson. McFarland is a 2003 graduate of Tri-Valley High School and grew up in the Hartford area.

For 14-month-old Landry, it’s been a life full of tests and doctors visits after something seemed off when he was only four months old.

“He stopped gaining weight completely, but he looked pretty normal, so we found ourselves taking him into the doctor all the time. He started having episodes of projectile vomiting, so we took him to the ER, they do tests, everything would come back negative, and they’d send us home,” McFarland said.

This went on for a while until they concluded that Landry may have a protein intolerance, but problems continued, and they landed in the hospital again.

“And all sorts of tests. Tests, tests, tests. And again, at the end of that stay, the doctor said we looked at nearly every organ in his body and we can’t find anything wrong,” McFarland said.

Things got worse. Landry started to have hypoglycemic episodes where his blood sugar would drop, and so they did some genetic testing.

“We just kind of had a whirlwind of a summer trying to figure out what was going on with him. And very difficult, too, in the sense that everybody keeps telling you that your baby looks Ok and that he’s fine and that they can’t find anything wrong, but deep down you kind of know something is wrong,” McFarland said.

Landry was diagnosed with Congenital Disorders of Glycosylation, or CDG – specially PMM2-CDG. The condition affects how sugar building blocks are added to proteins in cells of the body.

David Pearce, president of Sanford Research, says they partner with the Sanford Burnham Institute in California for research related to CDG.

“The cells in our body are made up of 24,000 nuts and bolts, or proteins is what we call them. They’re the things that make things hold together and function and communicate. Some of those genes modify or tell other genes or proteins what to do, and this is what Congenital Disorders of Glycosylation have a defect in,” Pearce said.

Pearce uses an analogy to explain how the disease affects the body.

“If you put the key to a car in the engine to start the engine and all these things happen. If the key is not working, then it doesn’t precipitate all these other things starting in the car. You could still push the car and it would move, but that’s not very effective, right? But you can’t drive the car,” Pearce said.

McDonald says that some children born with CDG don’t make it past their first year of life and that many that do never walk or talk. It can also cause neurological issues, development delays and complications with many of their organs.

In little Landry’s case, his doctor at Mayo Clinic tells the family this is one of the mildest cases of CDG they have seen. Right now, he does physical therapy one to two times a week to work on his motor skills.

“It’s basically a lifetime of physical therapy, occupational therapy, speech therapy, but for Landry, we’ve been lucky enough that he’s on par with a lot of things that he should be doing at this point. And we don’t know if Landry, what his future will look like once he get older, but we’re hoping that that’s mild as well,” McDonald said.

But they just have to wait and see.

“The hard thing about this condition is people can’t tell you a lot about what to expect,” McDonald said.

Landry is one of 350 people in the U.S. diagnosed with CDG. McDonald says doctors believe it’s more prevalent than we know.

“They think it’s probably one in every 20,000 to 80,000, and if that’s the case, if the math adds up, then there should be people in South Dakota that have it and just may not be diagnosed,” she said.

McDonald says there are no FDA approved treatments for CDG, so all the money raised this weekend will go toward finding one.

The family also wants to raise awareness so people don’t have to go through the same struggle as they did.

“If we could’ve gotten that done right away and pushed harder for that, it would have saved a lot of hardship as far as time in the hospital, time away from our daughter, time away from work. You know, it still would have been hard to get that diagnosis, but I think the most challenging part was just when we didn’t have an answer,” McDonald said.

The benefit is Saturday, April 29, at Buffalo Ridge Brewing in Hartford from 5-9 p.m. It will include a bean bag tournament, silent auction, live music and more.

If you’d like to donate to the cause, you can do so here.