February 1, 2024 — 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 Jordan family of Ernul, North Carolina, February truly is a month to celebrate selfless gifts from the heart. Their daughter, Lainee, is alive and able to celebrate Valentine’s Day (also recognized as National Donor Day) this year because of the new heart she received a few weeks before her 15th birthday.
Mom Julia vividly remembers Lainee’s siblings’ collective excitement when she and the new baby came home from the hospital. But she also remembers the tiny baby’s unusual chest movements with each breath she took. Julia said Baby Lainee’s chest looked like it was caving in deeply each time she cried. “I began to get increasingly worried when she would cry because it looked like her heart was literally beating out of her chest,” Julia recalled. “So within just a few weeks of bringing Lainee home after she was born, our pediatrician sent us to ECU Pediatric Cardiology in Greenville, North Carolina, where special heart testing was done.” Julia and Travis will never forget how quiet the room became when the first pictures of Lainee’s extremely enlarged heart appeared on the exam room screen in March 2007.
Lainee, who was not yet three months old, was diagnosed with an extremely rare congenital heart disease called Hypertrophic Cardiomyopathy. While this news was shocking to Lainee’s parents, the diagnosis almost became unbelievable when the cardiologist told them in his many years of practice, he had only seen this one other time.
Once the diagnosis was confirmed, the family travelled to Greenville every couple of weeks for about three months due to the need for additional testing. Their baby girl was connected to a halter monitor at all times. Every checkup in Greenville included echocardiograms and ultrasounds of her heart. Various prescription medications were prescribed and actually started to help. After a while, these visits to Greenville decreased because her condition was stabilizing. Eventually, Lainee’s daily life returned to a new normal.
Julia and Travis have many memories of how growing up with this diagnosis hampered Lainee’s childhood. Julia remembers, “She was not able to do things other children could do. She thought she could run like her friends, but she could not. She would get invited to parties but when the children were running around and playing, Lainee would be sitting. Eventually her diagnosis severely limited her childhood.”
But to the outside world, Lainee looked normal. She would try new activities, but she would simply be too tired to complete them. She attempted volleyball, but she could not run around the gym. Each time she hit the ball, she would have to sit down. But it was Lainee’s love of horses that became her saving grace. She loved riding horses and was able to do so with her enlarged heart. However, even that became challenging as her heart condition worsened.
Lainee underwent open heart surgery when she was eight years old because her heart medications were no longer adequately working. She had begun suffering extreme fatigue, weakness and periodic chest pains on a daily basis. The surgery, according to Julia, shaved some of the heart muscle and reshaped Lainee’s heart so it could pump more efficiently. Once she recovered from this major surgery, Lainee felt better and was able to be more active for several years. But Julia and Travis knew this was only a bridge to a life-saving heart transplant Lainee would need to survive into adulthood.
Near the end of 2020, while riding her horse, Cowboy, her family became concerned about a quick decline they observed. Julia thought Lainee’s eyes looked very strange and a little while later while feeding her horse, Lainee became lightheaded, lost her vision and complained that her chest was hurting. In February 2021, in the midst of the COVID-19 pandemic, Lainee was sent to Duke University Medical Center to meet with the heart transplant team. In March 2021, she was added to the United Network for Organ Sharing (UNOS) Registry and listed for a new heart. Everything seemed to be moving quickly, but the family was told that due to the pandemic, it could take up to a year for a new heart to be found.
Lainee’s family and friends were concerned about her declining health and the potential wait for a new heart. They were also concerned about how the wait, the transplant and the follow-up care could financially impact the family. In April, the Children’s Organ Transplant Association (COTA) received an online Get Started (COTAGetStarted.org) notification from a family member requesting more information. A transplant social worker at Duke had shared information about COTA with Julia and Travis … and Julia shared it with Denise, who was her cousin and neighbor.
“When a transplant worker at Duke talked to us about COTA it simply sounded too good to be true,” Julia said. “Even though we knew almost from birth a heart transplant was likely somewhere in our future, it was still a shock when the time came, and the bills started coming as well.”
On May 12, 2021, the family’s signed agreement arrived at COTA’s headquarters … the Jordan family officially became part of the COTA Family and Lainee became a COTA Teen.
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; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses.
On June 1, 2021, a COTA fundraising specialist trained the family’s group of volunteers via telephone so fundraising for transplant-related expenses could begin immediately. The staff member shared information about the organization’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Lainee was launched, and the website was immediately available for online donations for transplant-related expenses.
Within days, blogs were written and posted, and a COTA-dedicated Facebook page was linked and regularly updated. The result? The family’s network of friends and family members quickly got on board and got to work. Throughout the summer and fall months, numerous fundraising events were planned and promoted. A local eatery created Lainee’s favorite milkshake (peanut butter and banana) and hosted a month-long promotion where all proceeds from the sale of Lainee’s milkshake were donated to COTA. Another local business sold specialty candy apples and donated those proceeds as well. On a hot Saturday in July, Walk This Way Stables held a Pony Ride and BBQ Benefit for COTA, and the next Saturday, the Tuscarora Motorcycle Club hosted an extremely successful Poker Run. More fundraising events … and the community’s outpouring of support … continued for several months.
“It was all simply incredible,” Julia said. “Our volunteers used social media to get the word out, and COTA helped us connect with the local media. It was amazing, and heartwarming, for us to see our community coming together to make sure transplant-related expenses were something we did not have to worry about during a time of so much stress and worry regarding Lainee.” In a relatively short amount of time, friends and family members utilized COTA’s fundraising resources and raised nearly $80,000 for transplant-related expenses.
On November 1, 2021, Julia posted this on the COTA for Lainee Facebook Page: “So today we got the call we have been waiting for … our girl is getting a HEART!!! There are so many emotions. First, we pray for the family that lost a loved one. We are so very thankful for their gift of life. Second, we ask that everyone please say a special prayer for our Lainee. We do not know what time the surgery will start but we will keep everyone updated. We also want to thank everyone for all of the love, prayers and support!”
On November 2nd, she posted: “My baby girl gets her wish today which is to be able to one day soon ride her horse as she has always dreamed of doing.” And later that day she updated, “We have just talked to the surgeon, and they are about to close her up. WE HAVE SEEN OUR DAUGHTER’S HEART BEATING! He said it was a great heart for her. We want to simply say Thank You.”
On November 4th: “We had a couple of hiccups last night but today she has accomplished so much! She has gotten into a chair, sipped water and cranberry juice, eaten several spoonfuls of mashed potatoes and is now waiting on her daddy to bring some clear soup. Our STRONG and DETERMINED child has walked y’all!!!”
On November 13th, this update: “We are heading home!!” Julia explained that even though they were 2.5 hours away from Duke, the team thought she would do better recovering at home. For the first and second weeks, Julia and Travis travelled 2.5 hours, or 150 miles one way, several times for appointments and tests. But they were home and able to have a gratitude-filled Thanksgiving.
On December 1st, Julia posted: “A month ago today, I was at work sitting chairside with a patient when a dear work friend came and said, ‘Julia, you have a phone call.’ Lainee’s dad, Travis, was on the line and said, ‘WE HAVE A HEART!!!!!!!!!! All I remember is that I couldn’t breathe for a second and I wanted to cry but I was in a hurry to get home and get Lainee to Duke. This past month has been scary and an emotional roller coaster ride, but with God and the outpouring of love and support from family, friends and our community … HERE WE ARE! Our girl has aways to go, but she WILL get there. She is #LaineeStrong.”
In early 2022, Lainee had to return to Duke because of severe pain in one of her legs. Eventually, Lainee had to undergo orthopedic surgery with the family being prepared for a possible cancer finding. But that was not the case. After several stressful weeks, it was determined the dense and painful bone growth the surgeons had to remove was likely a reaction to stress. Lainee healed quickly after the surgery and resumed her normal activities.
On August 17th, Julia posted: “If you had told me one year ago today this was even possible, I don’t know I would have believed you!! If you saw me wiping tears away at tonight’s game just know they were tears of pure joy and happiness. To go from having a daughter who could barely breathe or walk to having a daughter who is a West Craven Volleyball player is absolutely amazing. To everyone who donated and prayed for us … to those who helped fundraise … to those who sent kind thoughts … we are still ever grateful and never will be able to thank everyone enough.”
Lainee just turned 17 at the end of December. According to Julia, Lainee is living her best life – just like any other teenager. She loves her horses, Cowboy and Gracie. She enjoys barrel racing and has her driver’s license. She will be going to college to study nursing because she wants to help patients like the many nurses who have helped throughout her transplant journey to date.
Julia and Travis are overwhelmed by the amazing support and love they continue to receive from their friends and family. Looking back now, they know they are extremely fortunate that when it was time to find a new heart for Lainee, a transplant social worker talked to them about COTA. “At the outset of Lainee’s journey, we were told a heart transplant can cost $1.4 million, but that did not include all of the transplant-related expenses. While living at the transplant center, we quickly found out how expensive everything was — especially food. COTA funds can be used for food costs, which was such a blessing when we discovered eating a meal came with a huge price tag while living at the transplant center. I was out of work from November 2021 until March 2022, and because of COTA, I did not lose my home. I did not lose my car. COTA funds were allocated for household bills. COTA allowed us to be by Lainee’s side without worrying about finances. That is a huge, heartfelt gift we will never forget.”
Transplant is not a cure. It provides a much better quality of life, but requires costly medications, treatments and monitoring. COTA exists to help families, like the Jordans, navigate their transplant journeys today … and well into the future.
According to Julia, COTA continues to be a blessing with the many 150-mile, one-way trips to Duke for regular checkups, post-transplant medications and expensive cardiology tests that are necessary to make sure Lainee’s new heart stays healthy so Lainee can continue to ‘barrel race’ to the finish line.
This Valentine’s Day, Julia, Travis and Lainee will be remembering their heart donor angel with love and will be treasuring their COTA volunteers. “We will be forever grateful for COTA’s commitment to helping families like ours,” they added. “COTA holds a very special place in all of our hearts.”
Happy Valentine’s Day and Happy Donor Day Jordan Family from your COTA Family!
Observed every year on Valentine’s Day, February 14th, National Donor Day is an observance dedicated to spreading awareness and education about organ, eye, and tissue donation. By educating and sharing the Donate Life message, we can each take small steps every day to help save and heal more lives and honor the donor’s legacy of generosity and compassion. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor.