Benefit planned for Star Prairie boy with chromosome deletion syndrome
In a lot of ways 4-year-old Brandon Koehler is a typical Star Prairie kid. He loves playing with his toy trains and tractors both indoors and outdoors whenever he’s not watching videos or playing games on his iPad.
In a lot of other ways, every day is a bit of an effort for Brandon, who struggles with a chromosome infliction called 22q11.2 deletion syndrome.
“Basically he’s missing the 11.2 section of his 22nd chromosome,” said Brandon’s mother Alicia Koehler. “It’s the second most common chromosome anomaly to Down’s Syndrome. With it there’s 186 known medical conditions that can go with it. Last time I checked the list he had 48.”
Though he has a lot of difficulties, Brandon isn’t down in the dumps about it.
“He’s a happy kid,” Alicia said. “He’s in love with his trains and Curious George and Lightning McQueen. He loves sports. He loves to go outside and play and go to the park and throw balls around.”
Alicia stays at home with Brandon every day, and her husband Aric Koehler works the night shift at Phillips Plastics in New Richmond. Many days are filled with Brandon’s doctor appointments, medical procedures and in-home care.
“We have a lot of medical appointments, therapies and meetings,” Alicia said.
Brandon was first diagnosed at 5 months after doctors kept diagnosing him with a sinus infection.
“They sent us to a geneticist, and that’s when we got his diagnosis,” Alicia said. “The reason he sounded like he had a sinus infection is because he was aspirating everything he drank.”
From there they were sent to another specialist who discovered Brandon was born with mild pulmonary stenosis.
Since then, the Koehlers have been on a neverending parade to and from doctors offices. In fact, little Brandon has been put under for surgery a dozen times, with multiple procedures being done in each surgery.
As a result of his ailments, Brandon is very small for his age — about 30 lbs. and less than 40 inches. Alicia says he is about the size of a 2-year-old.
“He has a lot of sensory issues,” Alicia said. “Eating has always been a struggle. When he was really little we threw away more than he ate.”
Though the family’s insurance and other benefit programs cover many of Brandon’s costs, the family welcomes donations to help provide additional care and resources for Brandon and to help with costs associated with travel to and from appointments in the Twin Cities.
“Financially, Aric works and I stay at home,” Alicia said. “That was a change for us. I tried working and it didn’t work. I had to leave so many times or he would be on the verge of being sick so I’d just sit there and worry. It just didn’t work for me to be working.”
Though the circumstances make money tight and Alicia unable to work, the couple aren’t too stressed by the situation.
“He is who he is, and we accept him,” Alicia said. “He needs what he needs. It’s just that some of those needs are out-of-pocket and they add up.”
A medical benefit for Brandon will take place from noon to 6 p.m. on Sunday, Oct. 27, at Star Prairie Sports Bar. The event will include a spaghetti dinner from 1 to 3 p.m., and the DJ Prairie Dawg will spin from 3 to 6 p.m.
The event will also feature all sorts of raffles, silent auction items and door prizes.
The Koehlers hope to use some of the money raised to pay for additional therapies, over-the-counter medications and travel expenses for his Twin Cities appointments.
Those travel expenses include parking fees at the various hospitals and medical centers, meals and more.
“We had 15 weeks that was either appointments or we had to be home because the [personal care assistant] was here or there was a therapist coming or we were going to a therapist,” Alicia said. “It was every day for 15 weeks.”
Those interested in donating but who can’t make it to the benefit on Sunday can stop at Royal Credit Union and deposit funds into the Brandon Koehler Benefit account.