Jordan Berkhoudt has been diagnosed with pediatric rheumatoid arthritis, pain amplification syndrome and mitochondrial disease since he first experienced achy legs in grade school as part of a continuing mystery that gradually robbed him of his ability to walk.
All missed the mark.
“Doctors at first could only explain it as growing pains,” said his mother, Michelle. “Jordan has always been at the top of the height scale. He's at least 6-foot-4 right now, so it sort of made sense.”
The Berkhoudt family, from Hamburg, has sought a diagnosis and treatment with growing alarm since Jordan, now 17, left high school early in his freshman year as his health worsened. He started using a wheelchair two years ago.
A search for answers led to specialists across the Northeast who earlier this year concluded Jordan has chronic Lyme disease, a related condition called Bartonellosis, and Chronic Inflammatory Demyelinating Polyneuropathy, a rare neurological disorder which disrupts nerve signaling and can cause weakness, paralysis and challenges in motor function, particularly in the limbs.
Dr. Elena Frid – a New York City neurologist who specializes in treating all three conditions – has prescribed a regimen of antibiotics and Intravenous Immunoglobulin Therapy for at least six months, in hopes it can reverse at least most of the damage already done.
The hitch: His regional health insurance provider has held off on paying for out-of-network care and asked the Berkhoudts to find someone in the region to handle the treatments. That so far has proven elusive, Michelle Berkhoudt said.
Extended family and close friends will address those uncertainties by hosting a Jordan’s Journey fundraiser from 6 to 11 p.m. Nov. 9 at Michael’s Catering and Banquets, 4885 Southwestern Blvd., Hamburg.
Cost is $20 for adults, $10 for children 4 to 12 and free for those 3 and younger. The benefit includes pizza, snacks, soda and a cash bar. Donations also can be made payable to Jordan’s Journey, and mailed to 10 Timothy Drive, Orchard Park, NY 14127, or given at venmo.com/Jordans-Journey.
Jordan loved the outdoors and played lots of baseball, hockey and volleyball when he was younger. He now spends most of his time playing video games or hanging out with family and friends, said his mother, a middle school teacher in the Ken-Ton school district.
His father, Dave, a self-employed carpenter, spends most days at home with Jordan.
Jordan's journey has been marked with confusion and frustration. Many of Jordan’s early symptoms mirrored Lyme disease but doctors in the region who saw him ruled that out because nobody in the family could remember seeing a telltale bulls-eye rash. Many who test positive for the tick-borne disease – carried by tiny insects whose numbers and territory have grown with global warming – don't recall ever being bitten.
Testing ordered two years ago by a specialist in the Albany area found four strands of the disease, his mother said.
“We had to do something because Jordan wasn’t getting any better,” she said. “He has been on almost every kind of pain med along the way and nothing helped. Right now, we're to the point where treatment is costing so much money, we need some help.”