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Last updated on Friday, February 3, 2017
(BLOOMINGTON) - February is the month to celebrate love and hearts.
Since 1964, February has been known as American Heart Month throughout the United States. For the Hornocker family of Sweetser, Indiana, February truly is a month to celebrate hearts, and selfless gifts from the heart. Their daughter, Vada, is alive and able to celebrate Valentine's Day this year because of the new heart she received almost two years ago.
Kirk and Beth Hornocker were delighted to find out early in 1997 they were pregnant with their first child. They were even more delighted when their infant daughter, Vada, was born in November. However, joy quickly turned to fear when Baby Vada was diagnosed with a congenital heart defect on her 21st day of life. On that day, the infant was rushed to surgery to undergo pulmonary artery banding surgery. A few months after her first birthday, a Hemi-fontan surgery was performed on Vada in February 1999. A year later in February 2000, the toddler suffered a severe stroke that left her without the use of her right arm and resulted in other mobility challenges.
Vada's health stabilized during her elementary school years, but when she became a teenager Vada was diagnosed with protein losing enteropathy (PLE) - a diagnosis that took the family by surprise. PLE meant that Vada's body would not be able to process proteins properly and according to her medical team, it likely meant she would need a heart transplant when she was older. According to Dad Kirk, when they heard that news from the medical team he and his wife thought it meant at some point in the future when Vada was much older.
Just a little over a year later in January of 2015, Vada was again at Riley Hospital for Children in Indianapolis, but this time she was in the ICU. Vada had contracted a life-threatening illness due to an infection that was linked to a stomach bug. She was kept inpatient two weeks to fight the infection and upon discharge, Vada's doctors told Kirk and Beth it was time to perform a heart transplant evaluation. Beth remembered, "In a period of two weeks, Vada went from fine to being placed on the transplant list."
While the winter months of 2015 are a little blurry to the Hornocker family, Beth does remember calling the Children's Organ Transplant Association (COTA) in mid-February to learn more about transplant fundraising. There were many family members, church friends, work colleagues and neighbors who were very anxious to find something they could do to help the beloved Hornocker family. Fundraising for transplant-related expenses became the obvious choice for the family's extensive support network.
"We became aware of COTA through a family at church whose son needed a transplant several years ago and the family worked with COTA to fundraise for transplant-related expenses," said Kirk. "The family is still able to receive allocations for the boy's transplant-related expenses today, and they encouraged us to reach out to COTA."
COTA is a 501(c)3 charity so all contributions to COTA in honor of Vada are tax deductible to the fullest extent of the law, and these COTA funds are available for her lifetime.
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA's model shifts the responsibility for fundraising to a community team of trained volunteers. At the end of March 2015, a COTA fundraising specialist traveled to Sweetser, Indiana, to meet with volunteers and walked them through the entire process. Within days of the on-site training, the COTA team in honor of Vada Hornocker was off and running, planning fundraisers and working with COTA's team of professionals.
On April 15, 2015, the Hornocker family received the news they had been waiting to hear -- a donor heart was available and the transplant team had determined it to be a good match. Vada's heart transplant surgery was long and challenging. Vada spent a week in the ICU after the transplant and she was heavily sedated for that very long seven days. Her post-transplant recovery was more challenging than Kirk and Beth had anticipated, and Vada's limited mobility that was caused by the stroke early in her childhood made things more difficult.
In early May 2015 Vada was moved from ICU to a cardiac floor. Just a week after that, she was allowed to leave Riley Hospital and continue her recovery at the Ronald McDonald House. On May 29, 2015, Vada returned to her Sweetser home.
According to Kirk, "We are fortunate to have really good health insurance, but there are many other extra expenses that do not get covered including gasoline to and from the transplant center, buying meals while away at transplant, paying for lodging at transplant and some of the 22 medications that Vada was taking each day after transplant." The COTA in honor of Vada team organized fundraisers that raised more than $80,000, and funds were available to be allocated to the family as their transplant-related expenses were submitted and reviewed by COTA's staff.
"We were amazed, thrilled and humbled by the support we received from our community as the COTA fundraising progressed," Kirk said. "COTA's staff members were wonderful to work with and provided our community volunteers with terrific training and guidance. COTA is a real blessing to a transplant family because COTA gives individuals a tangible way to help."
Unfortunately, Vada's transplant recovery has been somewhat challenging. In February 2016, which was during Vada's senior year of high school, she was re-admitted to Riley Hospital due to an infection that eventually caused septic shock. In March 2016, Vada underwent more surgery -- this time to have a pacemaker installed. Vada, Kirk and Beth worked hard to make sure she could graduate with her Oak Hill High School classmates in June. The family, including Vada's younger sisters Margo and Kate, enjoyed a Make-A-Wish vacation to the Bahamas immediately following the graduation festivities. Vada hopes to find a career working with animals.
According to Kirk, even though Vada has received her new heart, this journey is not over for the Hornocker family. "Throughout our family's transplant journey, the Children's Organ Transplant Association (COTA) has been a calming presence. COTA has given us an overwhelming sense of relief because we know that immediate needs are being met, and future needs will be met. You can tell the team at COTA not only wants to help with transplant-related expenses ... they really, really care."
This Valentine's Day, Vada will likely be eating her favorite foods and doing her favorite things, which will undoubtedly include time and perhaps a little mischief with her sisters. Kirk and Beth will be remembering their daughter's heart donor angel with love.
The Children's Organ Transplant Association (COTA) is a national 501(c)3 charity that provides fundraising assistance and support to transplant families. Since 1986, COTA's priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to a lack of funds. 100% of funds raised in honor of transplant patients are used for transplant-related expenses.
For more information about the Children's Organ Transplant Association (COTA), or to find a COTA family in your area, please email kim@cota.org.
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