Sandpoint woman battles rare disease

Ray and Jennifer Price Pollard are committed to the battle against an extremely rare genetic illness. However, they also enjoy the simple pleasures of family living with their two teenager daughters. (Photo by CAMERON RASMUSSON)

SANDPOINT — At first glance, Jennifer Price Pollard doesn’t seem ill, but looks can be deceiving.

 Pollard has a rare genetic disease known as MonoMAC — so rare, in fact, that only 30 people in the world have been diagnosed with it. The disorder brings with it a host of debilitating and often bizarre symptoms. Most seriously, her immune system is failing, but the genetic disorder also brings with it hearing loss, bone infections, shortness of breath and severe anemia, to name a few. Despite the struggle, however, she maintains a positive and determined perspective on life.

“I wouldn’t want to live my life any other way,” she said. “There’s a beauty to it, thriving under these conditions.”

  Beyond that, however, Pollard has a hope that her trials may amount to much more than herself. Leukemia is a common result from the MonoMAC genetic mutation, but this hasn’t yet happened to Pollard. Because of this, the nation’s top medical researchers believe her unique genetic makeup could be an invaluable puzzle piece in the effort to pinpoint a cure for leukemia.

One of the researchers working with Pollard, Steven Holland, told the Washington Post, “We study this disease because it is at the confluence of cancer and infection susceptibility.”

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Given the stakes, Pollard is determined to stay as healthy as she can to eventually assist the national science community however she can.

Pollard has lived with the disorder to varying degrees since she was 9 years old. At the time, the condition went undiagnosed. It wasn’t until advances in human genome research and some quick thinking by one of Pollard’s doctors that the true nature of her condition became apparent. However, health problems didn’t stop Pollard from having a full and active youth and early adulthood.

Today, the condition is more serious. Pollard maintains a continuous regiment of treatments and doctor visits. Because of her immunity deficiencies, she is much more susceptible to fungal, viral and bacterial infections. That makes mundane events for most people extremely dangerous for her. Pollard can’t go shopping, attend her daughter’s school functions or visit special community occasions out of concern that she might contract a life-threatening disease. Nevertheless, she never complains about her situation.

“She doesn’t want to use the illness either as a crutch or an excuse,” her husband, Ray Pollard, said.

All that caution is well-warranted. Most individuals with MonoMAC don’t make it past the age of 35. Pollard has that beat by 10 years and still retains every ounce of drive and determination. She’s holding out for the eventuality that medical professionals find a matching donor for a bone marrow transplant. At that point, researchers at the U.S. National Institutes of Health can continue the work they’ve started with Pollard.

All this amounts to an overwhelming financial burden for the Pollard family, a reality made worse by the fact that their medical insurance won’t cover any treatments based on its “experimental” nature. While NIH is willing to pay for the bone marrow transplant surgery once an appropriate donor is found, traveling and living expenses for Jennifer and Ray Pollard add up quickly. The last trip out to NIH headquarters resulted in an expense total of about $6,500.

There are several ways for community members to help the Pollard family. First, you can visit www.friendsofjennifer.com — a URL that will redirect you to her Facebook page. At that point, you can hit the donate button to place a contribution via PayPal. While you’re there, be sure to “like” the page. More likes will help the Pollards spread word about this rare condition.

For tax deductible donations, you can send a check to The Bone Marrow Foundation at 30 East End Ave., St. 1F, New York City, NY, 10028. Be sure to include Pollard’s name on the check.

You can also send a check to the Jennifer Pollard Trust at PO Box 733, Sandpoint, ID, 83864. This Panhandle State Bank trust is managed by the Pollard’s attorney and can only be used for medical expenses.

In addition, a benefit dinner and auction will take place on Oct. 20 at 6 p.m. at the Filling Station Youth Center in Clark Fork. This event will feature food by The Idaho Club chef Gordon Holmes and an auction with items donated from some of Bonner County’s finest businesses. Tickets cost $12 per person and are sold at Christ Our Redeemer Lutheran Church, Sandpoint Christian School, A Shear Inspiration, Sandpoint Super Drug or at the door on the day of the event. Call 304-5447 for more information.

Finally, those aged between 18 and 44 should consider adding their name to the bone marrow registry. All it takes is a cotton swap to the cheek and a moment of time. Visit www.marrow.org for more information.

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