OREM -- Greyson Brown was not expected to live past six months old. Today he is 4, and while his health is precarious, he is surviving against the odds.
The boy with a rare disease has muscular problems, making it difficult for him to do such simple things as eat. He requires daily treatments -- sometimes up to 12 per day -- to keep oxygen in his system. Nevertheless, he remains a good-natured, happy child.
His dad, Joe Brown, said Greyson's condition is similar to Nemalance myopathy.
"Even that is super rare," Brown said. "There are only five people that have made it past the age of 2."
Greyson's is even more rare.
"They have never seen his mutation before," Brown said.
As can be imagined, it is expensive to pay those medical bills.
Friends and neighbors scheduled a 5K on April 13 to help with those bills, complete with a raffle, awards and Wickify racing shirts. One of Greyson's favorite things is the Muppets. Following that theme, some of the volunteers helping with the race are dressing in Muppet costumes.
Namify, where Joe Brown is vice president of graphics, is helping put on the race.
"We kind of came into this when he was about 2," Brad Gasaway, the vice president of marketing, said. "Obviously your heart goes out to anyone in that situation, especially when you know the person. When he started to pass expected milestones, we wanted to help. It was something we could do to get behind him. We had the resources to help do this."
This is the second race to help Greyson. One was held two years ago, and about 120 people participated. They are hoping for a larger turnout this year.
"Two years ago it was a super heartwarming experience," Gasaway said. "We are tickled that he is doing great. We want to keep supporting that effort."
Those who make donations to the family in addition to the race registration will have their donations matched by Namify, up to a $10,000 total.
At the first race, Greyson was there in a stroller and the participants enjoyed meeting him. They anticipate that will happen again this year.
"A lot of the community got to meet Greyson," Gasaway said. "That was their favorite part. They saw how positive he is."
"He is so patient and good natured," Joe Brown said. "He will do whatever you want him to do. He hardly ever cries, even when he was an infant."
For the first two years of his life, his family's focus was on keeping him alive.
"Every time he would get a cold or cough he would be hospitalized," Brown said. "It would be once or twice a month, for a week or 10 days at a time. Around the time he turned 2, they finally had to move him to a rehabilitation center. He was there for a couple of months."
They now have equipment at home to help care for him. He is able to remain upright if his parents place him in that position.
"He can scoot around on the floor," Brown said. "He is really fast actually. His arms are weaker than his legs, so he often picks up things with his feet."
Mentally, however, he's where he's supposed to be.
"He is really social and is really smart," Brown said. "He has been talking since he was a couple of months old. He sings and loves music." Sometimes he sits by the windows watching other kids play and says he wants to run.
His three older siblings understand Greyson's situation and have adapted. They also help with his care.
"They have taken on a lot more responsibility at a younger age," Brown said. "I feel like they are really handling it very well. I wouldn't want this to affect them negatively.
"Even though it is very tough, things have completely fallen into place -- the kids' personalities, the neighborhood and people helping us out. At my job, they have been so understanding."
The family has been able to deal with the challenges.
"When one of us is really struggling, the other is in a higher place and can help out," Brown said. "You have to train yourself to think about life in a different way. You can't plan ahead or make any future plans. But he is one of the best things that has ever happened to me. You can't really explain it."
He said the race helps in more than one way.
"The financial help is fantastic," he said. "But it is a boost to keep going. It really helps."