Bloomington, IndianaJanuary is a month the Kiefer family of Jackson, Wisconsin, will not soon forget. Just two years ago in January, this family’s lives were turned upside down for the second time with devastating health news about their little girl, Kennedy.
Kennedy Elizabeth Kiefer was born October 9, 2009, to ecstatic parents, Eric and Jennifer. They already had a beautiful little boy, Lukas, at home so Kennedy’s arrival was another perfect chapter in this young family’s story. For the first eight months of Kennedy’s life, the Kiefers actually described everything as ‘perfect.’ According to Jennifer, “We had two beautiful and healthy kids, a great marriage, a new home and the whole world was truly in front of us.”
Just before Kennedy’s first birthday, Jennifer and Eric noticed her abdomen was a bit distended and hard to the touch, but they decided it was likely increased weight and baby fat. One of Kennedy’s daycare teachers also noticed the baby’s abdomen and encouraged Jennifer and Eric to get her checked before upcoming business trips that were scheduled for both of them. With their urging, Kennedy’s pediatrician ordered an x-ray and an ultrasound of her abdomen. The x-ray came back negative, so both Eric and Jennifer left for their business travel, knowing the ultrasound would be performed upon Jennifer’s return.
With Eric still out of town, Jennifer took Kennedy to the ultrasound appointment. She knew something was wrong when the pediatrician asked to discuss the results in person that same day. Jennifer was told Kennedy had a malignant tumor, called a Wilms tumor, in her right kidney. Baby Kennedy had cancer, and Jennifer was all alone when she heard this terrible diagnosis. Eric, who had to hear this completely unexpected news over the telephone, rushed home from his business trip.
The days that followed were full of appointments with specialists at Children’s Hospital of Wisconsin who were optimistic about a full recovery. In July 2010, eight-month-old Kennedy underwent surgery to remove her right kidney, which had been completely taken over by the tumor. A biopsy confirmed it to be a Wilms tumor. The good news? This type of cancer has an excellent cure rate so no radiation was required, and her course of chemotherapy would be a small dosage with minimal side effects.
After 19 weeks of chemotherapy and countless pokes, prods and ultrasounds, Kennedy was given a cautious, clean bill of health. The Kiefer family walked out of her last chemo appointment feeling very blessed.
The next two years were full of times of normalcy as this family picked up the pieces and put their lives back together. Kennedy and Lukas were thriving, and Jennifer and Eric breathed a little easier with each of Kennedy’s ‘normal’ follow-up blood test and ultrasound.
Then, in December 2012, a routine blood test showed a rise in Kennedy’s creatinine level and this concerned her team of doctors. They told Jennifer and Eric a biopsy of her remaining kidney was warranted. The biopsy, which was performed in January 2013, signaled heartbreaking news: Kennedy’s one kidney was rapidly failing due to an extremely rare genetic disorder. Kennedy’s only chance of survival was a kidney transplant. Jennifer and Eric were told this syndrome, which had only been diagnosed 200 other times worldwide, had caused her ovaries to be underdeveloped and they needed to be removed immediately before they turned cancerous.
January 2013 was a month of desperation and anguish for this Wisconsin family.
Once the shock subsided, they wasted no time in starting to search for a kidney donor. Many family members stepped up to be tested. After six excruciating months of testing and retesting, it was determined that Jennifer was a perfect match– she would be Kennedy’s life-giver once again.
It was during this time of testing and tears when the Kiefers discovered the Children’s Organ Transplant Association (COTA). Jennifer had found another family in Tennessee whose child had the same disorder and this family spent time with Jennifer via telephone talking about their experience, and especially the integral role COTA had played/was playing in their lives. This Tennessee COTA family told Jennifer about the myriad of transplant-related expenses, including the anti-rejection medications, the possibility of additional transplants, relocation expenses and more.
Jennifer is the first person to admit neither she nor Eric knew the first thing about fundraising. They investigated having a fund set up in Kennedy’s name at their local bank, but learned contributions to that fund would not be tax deductible for those contributing and those funds would be considered taxable income for the family.
“COTA is a 501(c)3 charity so all contributions to COTA in honor of Kennedy are tax deductible, and these COTA funds are available for Kennedy’s lifetime,” Jennifer explained. “After making the decision to partner with COTA, we realized it was one of the best decisions we ever made, and most importantly, it was the right decision for our family.”
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers. A COTA fundraising specialist traveled to Wisconsin to meet with the COTA for Kennedy K volunteers and walked them through the entire process. Within days of their on-site training, this COTA team was off and running, and within months these COTA volunteers raised more than $70,000 for transplant-related expenses.
According to Jennifer and Eric, “Working with the Children’s Organ Transplant Association gave us peace of mind when we were faced with the reality of Kennedy’s life-long medical needs. We know there are no guarantees when it comes to anything in life, but knowing we had support in raising funds for transplant-related expenses gave us hope that we could provide her the best care possible.”
After many appointments, tests and prayers, on July 11, 2013, Kennedy underwent her life-saving kidney transplant with Jennifer as her donor. Her parents both acknowledge having Kennedy alive and healthy today is a miracle. But they have seen other miracles throughout Kennedy’s transplant journey thus far, including complete strangers who came and supported the COTA for Kennedy K fundraising events, letters of support from people all over the country who learned of Kennedy’s story, and people all over the world who were praying for this little girl. Jennifer fondly remembers, “We witnessed those with little to spare who gave what they could, including a child who emptied her piggybank because ‘she needs it more than I do.’”
“We believe that every step of Kennedy’s journey to date has been a miracle, including the everyday compassion and love we received from our community, family and friends as well as the outpouring of support from complete strangers. People we know and those we do not know, choosing to set aside their own needs to help a little girl in need. The existence of an organization like COTA … there have been so many miracles,” said Jennifer and Eric.
Today, Kennedy is a strong and energetic little girl who loves all things Princess, and loves to play dress up. When she grows up, this odd-defying five-year-old wants to be a mommy and a doctor.
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1534705042toc@m1534705042ik1534705042.