A grandfather’s gift
Last week, Vail resident Dick Michaux and his friend, Jim Burger, took their bikes to Oregon’s coast, dipped their rear wheels in the Pacific, and started pedaling.
The pair embarked on a 3,800-mile cross-country journey to raise both awareness and funding for the battle against phenylketonuria (PKU), a rare metabolic disease. Dick’s five year-old granddaughter, Tia, has the disease, which means her body lacks the enzymes to break down protein. As a result, she can only consume the protein equivalent of half an egg a day.
Three times a day, Tia drinks a shake that contains most of the necessary amino acids found in protein.
“And if no other advances are made against PKU, she’ll drink that every day for the rest of her life,” Michaux said. “But everything else she eats has to be measured down to the milligram because almost everything has some protein in it. Even foods you wouldn’t normally think about, like apples and watermelons.”
Consuming more protein might cause anything from a seizure to a developmental disability.
If they go to a restaurant, the family carries a plate of low-protein food for the chefs to prepare for Tia.
“Recently we were on vacation in Cabo, and she was able to have some low-protein pasta, broccoli, carrots, avocado, and about three or four French fries,” Michaux said. Normally her dinner consists primarily of fruits and vegetables.
“If she stayed on this strict diet for the rest of her life, she’d be fine,” Michaux said. “But eventually 80 percent of children that suffer from PKU fall off the diet because of peer pressure. They don’t want to stand out in school and be different than the other kids, so that makes it tough.”
He started the Michaux Family Foundation to act as a nonprofit that channels funds to PKU research. He also acts as president on the board of the National PKU Alliance, which had its first meeting in June. And, just last week, he and his friend Jim Burger ” neither with any real cycling experience ” started pedaling across the nation with the goal of raising $100,000 for PKU research.
“I’m not much of a cyclist,” he admitted, laughing. “But I’ve been working with Lance Armstrong’s former coach, and have been increasing my distance by 10 percent each week. I’ve found that you can become pretty good at almost anything relatively quickly,” he said. “Except for golf.”
Michaux and Burger won’t be alone on their journey. Along the way, the pair will meet other families affected by PKU, and will be joined by guest riders in Oregon, Wyoming and Colorado. Schoolchildren as far away as Washington D.C. will be tracking their progress. Meanwhile, the two will keep a daily blog and post photos from the ride on their Web site, PKUCycleAmerica.com.
In addition to the thousands of miles that lie ahead, Michaux says entire families continue to suffer due to a lack of awareness about PKU, which occurs once every 10,000 births in the U.S.
“Twenty-four hours after a child is born, a pin prick can analyze five or six things. If they don’t catch it, then the child becomes mentally retarded,” he said. “But now, they’re saying that taking this genetic information is dangerous, and in Florida, you have to opt-in for the test. Minnesota and Maryland are now considering this opt-in policy, which would wind up causing many other families to needlessly suffer.”
The problems don’t stop there.
Most insurance companies don’t cover the low-protein foods needed by people afflicted with PKU. Michaux said even if individual states carve out room for expenses, insurance companies have exploited loopholes and skirted the directive to avoid covering PKU patients. As a result, each of Tia’s three shakes a day and all of her low-protein food must be paid for out-of-pocket.
As it stands, there is no cure for PKU, and the disease can only be managed. “Right now, stem cell research holds out a great deal of promise, but in the interim to finding the cure, we need to find something that reduces the need for a special diet as much as possible,” Michaux said.
With the National PKU Alliance, Michaux hopes to hasten research efforts. All donations are channeled through an independent review committee, which reviews all current research efforts, providing funding for those that hold the greatest promise.
Michaux and Burger should cross Colorado in about a week, starting on the 23rd and making nightly stops in Rand, Kremmling, Fairplay, Florence, Fowler and Eads.
After a few more weeks, several more states and a couple thousand miles, Michaux and Burger will finally dip their front wheels in the Atlantic, with one journey behind them and another looming on the horizon.
>> For more information on the ride or to donate, please visit the Web site PKUCycleAmerica.com.
Nathan Rodriguez may be reached for comment at firstname.lastname@example.org.
Support Local Journalism
Start a dialogue, stay on topic and be civil.
If you don't follow the rules, your comment may be deleted.
User Legend: Moderator Trusted User
Are we seeing more bears because there are more bears on the valley floor, or because we’re all spending more time at home? It could be a bit of both.