Jordan Berkhoudt is in consistent and immense pain, and one of the few times that Shelli Berkhoudt manages a laugh is under the absurdity of it all.
Here's her son, who's gone from a freshman invited to train with the Hamburg High School varsity volleyball team to a 16-year-old unable to go to school or even get out of his wheelchair on account of the pain.
What that pain is, doctors just can't sort.
"Jordan has seen dozens of doctors, and they all say something different," Shelli says, as lightheartedly as you could hope. "We're not sure which one of these doctors knows what they are talking about."
What the Berkhoudts know is that Jordan has Hypermobile Ehlers-Danlos, something a lot of athletes have that means the connect tissue in your body doesn't work correctly. For those athletes, that means rare ability. For Jordan, who has an extreme case, it also means constant pain.
He's also been diagnosed with Lyme Disease, which makes the doctors' task more difficult since Lyme can mimic other diseases.
Oh, and that Lyme has come with an infection called Bartonella.
"He doesn't have a loss of muscle tone, he just can't stand," Shelli says. "If he goes to stand, and he hasn't been able to try in months, the pain will knock him off his feet. He had visiting nurses for his PT for a while, but he's in so much pain that if he'd ever try... He's got a bubble of spinal fluid in his spine. Some people have and it means nothing, and others do and it means something."
The Berkhoudts are hopeful it carries some meaning, but the rare and uncooperative diagnoses have led to a load of travel to see specialists. Husband Dave, once Jordan's coach, has quit work. The Hamburg family is racking up costs.
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"All of the trips are out of pocket and a lot of time the doctors are out of network," Shelli says. "The Lyme doctor wasn't covered at all. We're averaging $20,000 a year in medical bills and we had to put a lift in our house to get him upstairs."
Getting on a plane is "horrible," but driving is not an option. It's crushing, because this kid could play: volleyball, hockey, baseball... now it's video games like Overwatch and Fortnite. And Jordan loves that, but the costs are stopping that, too.
"He's trying to save some money to start a gaming channel and get all that equipment," Shelli said."A lot of his friends are online, video gaming, and texting. He doesn't leave the house except for medical appointments. All his friends are turning 16 and learning to drive. He's angry, and the pain takes your mind places where you don't want to go. He doesn't think it'll get better."
"He was a smart athlete and he deserves the chance to try and get better again, even if it's not sports. It could just be going back to school. It's amazing how much this has changed our lives."