Help Mito Kids
Apr 01, 2014 01:58PM
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Avery, Morgan and Taylor Spry - Photo courtesy of Mariah Spry
by Bill RomanelliWhen Mariah Spry’s twin girls were diagnosed with mitochondrial disease at the age of three, her concern about how little was known about the disease was matched by the frustration of learning how few resources there are for families trying to manage it. “There’s no treatment for this disease—there’s nothing [doctors] give you in terms of weapons to fight it or even options to weigh,” Spry says. “All you can do is manage the symptoms.”
Mitochondrial disease is one of the biggest mysteries in medicine today. It prevents the mitochondria in our cells—the “engine rooms” that turn raw material into energy for our organs—from doing their jobs. There’s no identified cause or standard test for it, and even the symptoms are hard to label. A hundred people with the disease might all present it differently.
For Spry’s twins, and her third daughter born when the twins were about two, the disease affects their GI tract, making it impossible to digest solid foods. Their lives depend on very expensive and specialized formula, taken through a feeding tube, and whatever expertise the few mitochondrial specialists in the U.S. can offer. “We live in Nevada, but traveled to Ohio every other month to take the girls to a specialist until we finally connected with a specialist at Stanford,” says Spry. “The costs were enormous.”
The story of the Sprys is a case study of the burdens faced by families dealing with mitochondrial disease. A scarcity of specialists requires frequent and extensive travel—to say nothing of the medical costs and emotional trials—that aren’t covered by insurance. It’s for these families that Spry’s late father, Jim Pomares, and her brother, Michael Pomares, launched Help Mito Kids in 2009.
“Most people diagnosed with a serious disease don’t have the travel burdens that kids with mito do—usually they can find a local doctor to manage their care,” says Spry’s mom, Carol Pomares. “When we saw the burdens Mariah and her family were facing, we helped, but with no other resources out there, we knew a nonprofit was needed to help other families in the same situation.”
Since the organization launched, it has raised about $100,000 and assisted more than 20 families in several states. All of the group’s funds are acquired through donations, primarily from an annual 5K walk/run at the El Dorado Hills Town Center, set to take place on April 26 at 8 a.m.
“We’re an all-volunteer organization, so two-thirds of every donation goes to medical- and travel-related costs to support families, and the rest goes toward research for mitochondrial disease,” Carol says.
The first fund-raiser, organized by Oak Ridge High School students, drew about 100 participants and has grown steadily every year (for the past four years the Interact Club at Oak Ridge has sponsored the event). This year, Help Mito Kids hopes to get more than 500 participants involved and raise money to help the group fulfill its mission. “These kids are fighting for their lives. We want to do all we can to join them in that fight,” shares Carol.
For more details on the April 26 fund-raiser and to register, or to support Help Mito Kids as a volunteer, corporate sponsor or donor, visit helpmitokids.org.