More than anything, 10-year-old Claire Bevec loves to surround herself with animals, especially horses and dogs.
“I like to imagine that I’m riding a horse very fast because it makes me feel really happy and free,” she said. “I also like to draw and color pictures of horses.”
Claire imagines what she would like to be when she grows up; and topping her list is a wish to be a wildlife photographer for National Geographic Magazine.
“But I wouldn’t mind being a therapy dog trainer either, because they take dogs to visit sick people, or maybe a vet,” she said, thoughtfully.
Until recently, Claire’s dreams didn’t seem possible, but thanks to a kidney donor, a team of surgeons at Children’s Hospital of Wisconsin, and enormous prayer support, the fourth grade student from St. Mary Grade School, Kenosha, has a chance of doing whatever she wants to with her life.
Born March 16, 2001, to Linda and Frank Bevec, Claire was diagnosed with auto recessive polycystic kidney disease and congenital hepatic fibrosis shortly after birth. She was also born with a cleft lip and palate. The couple was told by doctors that their baby would probably not survive beyond a few days or weeks.
“We had her baptized in the NICU when she was two days old,” said Linda. “Then, when it appeared she was getting stronger, they talked about her needing a transplant when she reached 20 pounds. But she continued to thrive even though she had numerous setbacks and was readmitted to the NICU throughout most of her first year.”
Surprising everyone, Claire continued to grow and flourish despite numerous surgeries, hospitalizations, medications, clinical manifestations and other setbacks. By January 2010, the family was given the news that it was time to prepare for a transplant and search for a donor.
While Claire’s attitude is positive and living with the disease is the only life she has ever known, there are a few things she is anxious to change.
“I really don’t like not being able to eat certain things like bananas, chocolate, oranges or too much meat,” she said. (The low protein, low potassium, low sodium and low phosphorus diet helps to protect her kidneys and liver from further damage.) “And I get really sad when I have to get shots for my red blood cell count every week because it burns and hurts a lot. I don’t even mind having my blood taken, but the shot is the worst ever.”
Claire has undergone seven plastic and reconstructive craniofacial surgeries since she was four months old. She has undergone speech therapy and will need additional cranial and facial surgeries, but Linda said her daughter’s confidence and joy shines from within, describing her as a perfect gift from God.
“I hope she never forgets that, ever,” said Linda. “She is a quiet and reflective girl, joyful and happy – she wishes she didn’t have kidney and liver disease or a cleft lip and palate, but again, it’s all she has ever known.”
For a year, doctors searched for a suitable donor and despite three close matches, only one kidney donor was suitable. Finally, Claire was scheduled for the transplant Dec. 31, just as her kidneys prepared to shut down, which would have forced her to begin regular dialysis treatments.
Days before the surgery, she needed a nephrectomy to remove both severely enlarged cyst-covered kidneys, placing her temporarily on dialysis until the transplant surgery.
The donor, Jeff Albrecht from Lafayette, Ind., gave Claire the gift of life and after more than five hours, the transplant was completed. Jeff’s recovery was rapid and he was soon well enough to visit Claire in the hospital before returning home to recuperate.
Baby steps are the way the Bevec family copes with Claire’s post-surgical period. There was the day she had two IVs removed and sat in a chair. There was the day she moved from Pediatric Intensive Care to the post-surgical floor, the day her catheter was removed, and the day she walked around the nurse’s station.
They rejoiced when she drank, ate, slept and, finally, on Jan. 12, they thanked God that Claire joined Mom, Dad, 11-year-old Frankie and 5-year-old Grace at the dinner table.
“Thanks be to God for bringing our Claire home,” said Linda in a Children’s Hospital of Wisconsin Blog update, “Five of us at the table once again, prayers of thanksgiving, a teasing big brother who awkwardly is happy to greet her and a little sister full of giggles and wiggles. And there’s our Claire, shining like a bright star right in the middle of it all … where she belongs.”
On March 3, Claire, greeted by a large welcome banner created by her fellow students, returned to school at St. Mary. She also celebrated her 10th birthday on March 16 with a walk on the beach and a soccer game with her visiting cousins from California, according to Linda’s blog, cotaforclaireb.com.
While each day of Claire’s life has been a blend of suffering and joy, trial, pain and disappointment, the single thread weaving through the family was faith. They turned to God, and were helped by the love, friendship and financial support of their prayer community.
“We belong to St. Anne Catholic Church in Pleasant Prairie and joined after moving here five years ago from Indiana, and have never felt more at home in a church. It truly is a faith family at St. Anne, a living body of Christ,” said Linda. “My faith has been challenged and strengthened by all of this in many ways. I always had a solid faith growing up and experienced typical ‘wandering’ at times. But it’s deeper and broader now and there’s always room to grow.”
For the Bevecs, the difficulties in life offer a point of encounter with Christ.
“That’s why the soil down in the valley is so rich and fertile. The time we all spend there is an opportunity to really speak with our Lord, to experience his love, grace and guidance – and to grow,” Linda explained. “Having Claire in my life has given me so many opportunities to know Christ and to continually seek him.”
A lesson learned beyond the suffering with a special needs child is the importance of intercessory prayer, an action that even young Frankie and Grace are able to grasp and execute.
“Our son Frankie has spent a lot of time in hospitals with Claire over the years, and our daughter Grace is just starting to experience that,” said Linda. “We pray for children everywhere who are hurt, sick or suffering. I hope they will always have tender hearts that way.”
As they walk with Claire on her road to recovery, the family has become vocal proponents for the value of organ donation, specifically the Wisconsin Department of Health Services organ donor registry, and the Children’s Organ Transplant Association, which helps families raise money for all the uncovered transplant related expenses.
“Even with the very good medical insurance, we’re expected to pay $60,000 out of pocket for Claire’s nephrectomy, dialysis, transplant and immunosuppressive drugs,” said Linda. “Both our parish and school family have rallied together to help us with this. We are so humbled and grateful and it’s hard to express in words how we feel. John Kennedy once said, ‘The highest form of gratitude is to not just to utter words of thanks, but to live by them.’ We hope to return the kindness and generosity we’ve received and keep passing it on to others in need – keep God’s grace flowing.”
For Claire, her dreams of running free with the horses is about to come true as she was recently approved through the Make-A-Wish Foundation; it’s a gift that has given her the will to fight through the pain.
“Her wish is to spend a week working on a horse ‘dude’ ranch in the mountains of Montana,” said Linda. “She just loves animals and she always says, ‘I was meant to live in the country.’ She can’t wait to see mountains out West and go hiking and horseback riding – it’s the free spirit in her, no doubt.”
No doubt. And as Claire aptly adds, “I love, love, love, love, love horses!”