One COTA Mom Shares Her Family’s Journey to Transplant and the Selfness Donation that Saved Her Son’s Life
Every day in April (National Donate Life Month), people across the United States are encouraged to stop and think about saving lives. April is a chance for Americans to make a special effort to celebrate the tremendous generosity of those who have saved lives by becoming organ and tissue donors, and to encourage others to follow their example.
Why are these 30 days of April so important to raise awareness about becoming an organ and/or tissue donor?
Ø The need is growing on a daily basis.
Ø Currently there are 105,720 people on the organ waiting list in the United States.
Ø Each day, 77 children and adults get their life-saving organ transplant, but 19 others die because an organ did not become available in time.
For one Texas COTA family who beat the odds, National Donate Life Month is an important time to share their son’s transplant journey, and to acknowledge the anonymous family whose donation turned anguish into joy.
Weylin Kleinman was born on July 14, 2000, in Round Rock, Texas, several months after doctors had, while he was in utero, spotted what they thought was a cyst in his stomach. Tests done immediately after his birth showed an underdeveloped baby inside Baby Weylin’s abdominal cavity. Doctors removed it one week later and within days of the surgery discovered that Weylin’s small intestines were not functioning -- leaving the infant no way to process food. Weylin’s overworked liver also failed.
His parents, Kristi and Paul, were told Weylin’s condition, called fetus-in-fetus, was profoundly rare with only 50 to 75 cases documented worldwide in more than 200 years. Weylin was put on organ waiting lists at hospitals in New York City, NY, Pittsburgh, PA, and Omaha, NE -- all of which specialize in children’s transplants. And the family’s long and nerve-wracking waiting process began.
According to Kristi, “Once we started down the pathway of researching organ transplants, we instantly knew we were going to need help financially. Many of our friends and family members started trying to raise money for us on their own, but they were struggling to be successful.”
“While I was on a visit to the transplant unit at Pittsburgh Children’s Hospital, I met a fellow transplant family who was using the Children’s Organ Transplant Association (COTA). They explained to me the many benefits associated with COTA, and told me how much trust they had in the organization. I fell in love with COTA on the spot and called my family and friends in Texas to discuss the concept.”
Almost immediately the Kleinman’s friends and families rallied together to work with COTA. According to Kristi, who was still far from home with a very sick baby, everyone was elated and that elation gave her a sense of encouragement and hope that her son’s life would be saved. She said, “I could not believe how fast a COTA training team could get to Texas from Indiana. The relief came to me almost as quickly, once I knew our volunteers were working with this incredible organization.”
Over the coming months, the COTA team orchestrated bake sales at major retailers, hosted Easter egg hunts at the Dell Diamond (a local AA baseball team) and managed coin collection canisters located throughout their community. In addition, family members told Kristi working with COTA allowed donors generosity to be rewarded through the tax deduction for their gift. COTA also helped to open the door to the media for this transplant family, and according to Kristi, “our adorable baby was embraced by even more members of our loving community.”
COTA provided a much-needed distraction while Kristi and Paul waited for a suitable liver and small intestine to be donated. The family’s transplant-related expenses mounted -- even during the long wait for transplant. The COTA team raised more than $75,000 -- and every penny was, or will be, used to cover his transplant-related expenses, including renting a medical transport jet when the family received ‘the call’ in Texas and had a window of only a few hours to get to Pittsburgh so Weylin could receive a second chance at life.
Weylin’s transplant surgery lasted 12 hours and came with a price tag of $1.8 million. Even more wrenching was knowing that a three-year-old girl was killed in an accident. Her family’s decision to donate her organs gave Weylin his second chance. Since receiving that selfless gift of life almost a decade ago, Kristi has become a vocal supporter of organ donation; she is a major supporter of National Donate Life Month activities.
“Another jaw-dropping aspect of COTA is the relief in not having to search for more funds once your child is blessed with donated organs,” said Kristi. “COTA tried to prepare me for how overwhelming it is when the organs come and the transplant actually occurs, but I figured after all of the waiting, this would not be the case with me. I was wrong.”
“This is truly one of the miracles you receive when working with COTA. Their professionals have seen so many families go through this traumatic event, and they know how to make sure you are ready for what you are about to endure. With COTA, I never once worried about the huge medical bills or the cross-country check ups or any of those transplant-related expenses that we will have for the rest of Weylin’s hopefully long life.”
Weylin has not experienced one bout of rejection since his small intestine and liver transplant nearly a decade ago. He plays on flag football and basketball teams. He loves his little sister and video games. He argues with his mom about homework and bedtime. He and his family travel from Texas to Pittsburgh for an annual check-up where they are able to show off the miracle performed there on June 8, 2001.
Weylin’s second chance at life was possible only because of a family from thousands of miles away who, in the face of their own personal tragedy and grief, made the decision to donate life.
The Children’s Organ Transplant Association is a national charity that provides fundraising assistance for children needing life-saving transplants. 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 lack of funds. 100 percent of all funds raised in honor of patients are used for transplant-related expenses. For more information, visit www.cota.org or call 800.366.2682.
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