Family Works To Save Lives After Woman Diagnosed With Disease That Killed Her Mom

This is an archived article and the information in the article may be outdated. Please look at the time stamp on the story to see when it was last updated.

URBANDALE, Iowa –A metro mom is battling a rare disease that's often difficult to diagnose. She and her husband are facing the diagnosis head on, and not just to help her.

You’ll find plenty of fun moments in the Wilharber house. Mom Meredith said, "They're busy, 100 percent boys.”

She stays at home with 3 ½ year-old Kyler and 18 month-old Beckett. Wilharber battles something making it even harder to raise two young boys. She said, "Everyday is different. Some days I live a fairly normal life. Other days I can't get out of bed. I'm extremely exhausted, and my body doesn't want to move."

Early this year, she was diagnosed with pulmonary hypertension. "It is high blood pressure in your lungs. The arteries in the pulmonary arteries, in my body, the walls are thickening and constricting, and it's causing the oxygen and blood flow to move much slower through my body," she said.

Symptoms include dizziness, shortness of breath, swelling and chronic fatigue. Patients are often misdiagnosed for up for up to three years and treated for things like asthma, bronchitis or even the common cold.

Wilharber caught the disease in its second stage because she knew about it. "My mom passed away in 1992 from pulmonary hypertension, so I've stayed on top of the disease throughout the years because I knew it could be hereditary."

Meredith started taking daily medications to manage the disease. Her husband Randy Wilharber started researching it and realized something needed to be done. "What struck with me the most is Meredith said repeatedly she wanted to help others, that this disease had bit her family twice in her lifetime, short lifetime, that she wanted to do something to make sure other families didn't have the same fate," he said.

In September, the Blue Lips Foundation was born. The couple hosted an event in early November to mark Pulmonary Hypertension Awareness Month. They have already raised $25,000.

The money will go to researching a way to detect the disease early. Randy said, "To get people into the programs faster and more efficiently. People who suffer from PH need to be on these therapies as fast as possible. Every day that they're not, they're one step closer to death."

It's something the Wilharbers are fighting to prevent. Meredith said, "I didn't have my mom growing up, and I want to be here as long as I can for them."

The Blue Lips Foundation will host its first "Fore the Heart" golf outing in May. You can find out more about the foundation on The Blue Lips Foundation website.