As a little girl, all Claire Bevec wanted to do was grow up, ride horses and become a wildlife photographer for National Geographic. Her dreams did not seem to be possible with a diagnosis of Auto Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis shortly after birth. She also had a cleft lip and palate. Doctors initially told her parents, Frank and Linda Bevec, that she would probably not survive beyond a few days or weeks.
Placed on a ventilator with tubes and beeping machines that were keeping her alive, little Claire’s priest baptized her in the Neonatal Intensive Care Unit.
“He used a medicine cup of water to pour over her as she lay there,” said Linda. “I couldn’t hold her at that point because she was on the ventilator.”
Doctors prepared Linda and Frank for the worst, but God had other plans. Claire overcame each setback, including numerous cranial facial surgeries; the family relied on their faith and their faith family at St. Anne Catholic Church to get through each day. Because she has the rarest blood type, O-Negative, it complicated her chances of receiving a kidney transplant, as no one in her family has her blood type.
On Dec. 31, 2010, as 9-year-old Claire’s kidneys began shutting down, she received a life-saving kidney transplant from a donor in Lafayette, Indiana. The five-hour surgery was successful, and though she’s had other setbacks along the way, Claire is now an active 17-year-old junior at St. Joseph Catholic Academy (SJCA).
Despite her miracle of life, Claire is aware that most are not as fortunate and die before finding a donor. In Wisconsin alone, there are more than 2,000 individuals waiting for a lifesaving organ transplant. Each day across the country, 18-20 die while waiting for an organ transplant. Claire wants to change those statistics.
Claire and Linda said that life is the greatest gift of all and one that can be shared by saving the lives of others who are waiting for an organ transplant. As April is National Organ Donation Awareness Month, Claire decided to organize an organ donation drive on Wednesday, April 11, at SJCA.
SJCA staff allowed students to wear blue and green in recognition for the official colors of Donate Wisconsin. Donate Life materials filled tables in the school’s cafeteria, as well as balloons, freebies, candy, wristbands and water bottles. Kim Bahr from the Wisconsin Donor Network Office was available during the lunch hours to answer questions. Theology teachers presented information on organ donations to students and Fr. Todd Belardi incorporated the message of organ donation and creating a culture of life in his homily during the school’s morning Mass.
Every student, faculty or staff member that registered before or decided to register Wednesday were able to sign a Donate Life flag that was given to SJCA to keep and fly on the flag pole every year in April. Donate Wisconsin officially recognized SJCA as an Organ Donation Awareness School. Bahr also led students, faculty and staff through one minute and 15 seconds of silence around the flagpole in recognition of the 115,000 individuals on the organ transplant waiting list in America. Bringing awareness to the need for organ donors is very important to Claire, who thinks about the ones who died before getting the opportunity she had.
“I had wanted to do this my freshman year, but was too shy. Then in my sophomore year, I got really sick and missed almost the entire first semester, so I had to catch up on homework. This year, I really wanted to do this,” said Claire. “It is extremely important for people to donate their organs. I would not be here today if someone hadn’t donated to me. I was in critical condition when my donor had finished being tested, so we did the surgery as soon as possible. There are so many other people that need organs and there are never enough donors.”
While there are myths about signing up to become an organ donor, Claire encourages those with questions to come to her, so she can dispel them.
“I am asked a lot of questions, but the thing about misconceptions is they’re just that, a misconception,” she said. “It’s just a lack of understanding or believing a rumor about organ donation, but it’s important to ask questions so I’m happy to answer them. It’s better to ask a question than to assume.”
In Wisconsin, approximately 59 percent have signed up to be organ donors, and Kenosha County has 53 percent of its residents that have registered. Claire hopes that awareness will grow and that more will sign up.
While organ donation is something most don’t have a personal experience with, Linda said that because it touched their lives, they are compelled to share.
Linda and Frank have encouraged their daughter to use her suffering for good, to be an advocate for her disease and organ donation.
“I think Saint Mother Theresa of Calcutta said, ‘Wherever God has put you, that is your vocation,’” Linda said. “I always hope Claire will come to realize that God doesn’t cause suffering, but he can help turn it into something good when you meet him in those difficult times, accept them and offer it back to him.”
To learn more about becoming an organ donor, visit the Donate Life Wisconsin website: donatelifewisconsin.org