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In 2002, Chris and Cheryl Dearth excitedly welcomed their first child into the world. The couple in their early 30s believed they were about to start a family. Instead, they wound up starting a new chapter in the lives of dozens of friends and family members — and have given hope to hundreds of people across the U.S., including their son, Zachary.

In July 2005, Zach was diagnosed with Mucopolysaccharidosis Type II, a serious and life-threatening genetic disorder that interferes with the body's ability to break down complex carbohydrates.

Never heard of it? You’re not alone. It’s a very rare disease that affects only about 2,000 in the world, roughly 500 of which live in the U.S. It is more commonly known as Hunter Syndrome — which isn’t helpful in Western New York, as the Dearths have discovered, due to the existence of Jim Kelly’s Hunter’s Hope foundation. (“Theirs” is named after physician Charles Hunter, who first diagnosed the disease nearly 100 years ago.)

The disease is most commonly found among males, and is most often diagnosed between the ages of two and four, as the physical manifestations, such as distinct facial features and a larger than normal head, begin to present themselves. The Dearths, however, didn’t have a textbook case, and it wasn’t until Zach was going through some pre-surgery tests for a planned tonsillectomy that a physician suspected anything was wrong.

“They saw just a couple of little things, and they recommended we go see a geneticist,” says Cheryl.

They quickly realized their lives would be forever changed. The disease requires a great deal of palliative treatments to help slow its progress; there is no cure. In Zach’s case, he receives treatments every Sunday as part of his Enzyme Replacement Therapy.  No exceptions. He also attends physical and speech therapies every week and has quarterly/yearly appointments with specialty doctors. Surgeries are also often required, and Zach has experienced those too – 10 thus far in his short eight years.

“The beginning was, of course, awful,” Cheryl recalls. “It takes about a month to get an official diagnosis, so you’re basically in denial that whole time.”

When the family finally came to grips with this devastating news, Chris and Cheryl did what every good parent would: they started learning. They read books, online articles, medical journals – just about everything they could get their hands on to better understand the disease and increase Zach’s chances for a long, enjoyable life.

As a rare disease, however, there wasn’t a lot of information out there, and there were even fewer support resources or organizations dedicated to finding a cure. So Cheryl and Chris did something about that.

In 2006 they founded Making Precious Strides, a non-profit dedicated to raising funds for medical research and generating greater awareness of the disease. They also organized Zach’s Run, a 5K race in the family’s home city of Atlantic City, N.J.

“The [run’s] first year was amazing,” says Cheryl. “We had a board of 10-12 people, tons of friends and family support, and a lot of corporate sponsors. We raised $35,000, but things got harder the next few years as the economy got worse.”

Moving away didn’t help either.

The Dearths soon found themselves in Fredonia, as Chris was named SUNY Fredonia’s Director of Admissions in 2007. Cheryl soon joined the campus too in the Financial Aid department, and is now a member of its Professional Development Center.

“It was tough, having to organize things from nine hours away,” she admits.

But they found a way, and in 2010 Zach’s Run completed its fifth year. To date, it has generated more than $100,000 in donations, which the Dearths have directed to the North Carolina Children’s Hospital at the University of Chapel Hill, one of the world’s top research institutions in the fight against Hunter Syndrome. They are also committed to providing families affected with Hunter Syndrome with financial aid for medical expenses, therapies and treatments.

So how is Zach doing today?

“He’s a happy kid,” says Cheryl. “He goes to school. He plays. For the most part, he’s been pretty healthy and stable. He’s regressed in the past two years and now is non-verbal, but he laughs a lot! And we’re headed down to North Carolina [Children’s Hospital] next week to see if he qualifies for a new trial treatment.”

And on May 1, the Dearths will expand their education and outreach efforts to their new home in Western New York with the first Zach’s Run in the Village of Fredonia, with a goal of reaching $10,000 in donations this first year.

“From our first day in Fredonia, everyone has made us feel like part of the community,” Chris attests. “We have been working toward bringing Zach’s Run here for some time, and the support we have received thus far has been overwhelming.”

The Fredonia event will begin at 9 a.m. at the Clinton Avenue Little League field. It will consist of a 5K (3.1 miles) run and one-mile “fun run” (or walk) which is open to all ages.  The 5K race features many age groups, including men's and women's categories of 14-19, 20-24, 25-29, 30-34, 35-39, 40-44, 45-49, 50-54, 55-59, 60-64, 65-69, and 70+. Trophies and medals will be awarded for first, second and third place in each category.  Awards will also be given to the overall top three runners in the men’s and women’s division.  Lastly, the youngest 5K finisher will be recognized with a special award.

There will also be a “Tot Trot,” which entitles children to participate in the event and other kids’ activities.  All participants will receive a t-shirt, participation medal and goodie bag (while supplies last).  Food, beverages and entertainment will be provided to all that attend, and shirts will be given to the first 400 registrants.

“It is going to be a successful event and a great day, and Cheryl and I look forward to seeing and personally thanking everyone who comes out for this great cause,” Chris added.

To participate, register by Thursday, April 28 fill out a form located at a variety of local stores.  Registration is $20 prior to the event and $25 on the day of, beginning at 7:30 a.m. Children under 13 are free, and event sponsors are still being accepted as well.