Some people believe that miracles happen everyday. Linda and Frank Bevec believe that they were blessed with the miracle of life. Their daughter, Claire, was born five weeks before her due date by emergency C-section. The day after Claire was born she was diagnosed with ARPKD.

After 45 very long and difficult days, the Bevecs were able to take Claire home. But, in the months that followed, she was in and out of the neonatal intensive care unit (NICU) for uncontrollable blood pressure and a failure to thrive. Each time she went into the NICU she was not expected to survive. But, Claire is a fighter and has made it through eight successful surgeries since birth.

Currently, Claire is 5-years-old, and even though tests show that her ARPKD is progressing, she seems to be getting stronger with each day. On Sept.17, 2006, Claire and her family participated in their first Walk for PKD in Milwaukee, WI.

The family only had six weeks to pull a team together and try to raise money. But, to much of their surprise, the Bevecs were able to form a team of 29 friends and family members. They called themselves the “Kenosha Claire Bears,” after a nickname Claire received in the NICU because she was so feisty.

Claire just started kindergarten this fall, and her family is new to Kenosha. But, it only took a few short weeks for Claire to inspire those around her. Claire’s teacher was so amazed by her and her spirit that she sent a letter to all the parents in Claire’s school asking them to support the Kenosha Claire Bears. In just a few short weeks, Claire’s teacher collected $625 in donations. Together, the team raised $3,850 for PKD research, and donations are still coming in to the family.

Claire has had many complications since birth. She has experienced frequent urinary tract infections, dehydration, sepsis and unexplained infections. At the age of 2, Claire was diagnosed with congenital hepatic fibrosis (CHF), a specific type of liver fibrosis seen in ARPKD patients. CHF has caused her to suffer from portal hypertension and caused enlarged varacies in her esophagus. Claire currently takes 10 daily doses of six different medications daily.

As a baby, Claire was unable to crawl due to the weight of her kidneys. She worked very hard for three years in weekly physical therapy sessions to master walking and running skills most children take for granted.

“I’m convinced she not only got a rare disease but a rare outlook on life and a rare ability to deal with adversity,” Linda said.

Despite all of this, Claire seems to take it all in stride. Besides her standard testing, Claire participates in a National Institutes of Health (NIH) research study every year. Here, she goes through more in depth tests, blood draws and extensive examinations. Her parents are open and honest with her while trying to explain everything along the way. She recently told her mom she wanted to be a doctor when she grows up so that she’ll never need to go to the doctor again.

“It made me smile because I’ve always tried to empower her in these situations, and to hear her say something like that tells me she’s definitely thinking about wanting to take control rather than feel helpless and vulnerable,” Linda said. “I’m so proud of her.”

Like most girls her age, Claire is very active and athletic. She loves to ride her bike, play ball, read and swim. This summer, she caught her first fish and learned to ride her bike without training wheels. But, she has had to work very hard to get where she is today.

“There are just no clear answers as to why any child has to begin their life with a chronic and progressive disease,” Linda said. “But, if you can put it into perspective, you’ll find God’s grace and will begin to see your way through it all. We are so blessed to have Claire …just the way God made her.”