His Mom’s Paired Kidney Donation Paved the Way
June 3, 2024 — For years to come, June will be a month full of celebration and joy for the McGuire family of North Carolina. Knowing their son would need a kidney even before he was born, many prayers were answered a year ago this month when the 15-year-old received a new kidney, and a second chance at life, on June 30th.
“When I was pregnant with Evan, we had an ultrasound done at 20 weeks that revealed the flap on his bladder was not functioning which caused urine to backflush to his kidneys,” Mom Stephanie explained. “We went to a specialist in Greenville who did a procedure to empty his bladder while in utero. It was successful and the flap started working; however, his kidneys were already damaged. I was watched closely and on June 30, 2008, which was also my birthday, I was admitted to UNC Women’s Hospital for bed rest until it was time for our baby to be born.”
The challenges for this young family were growing. Stephanie had very low amniotic fluid levels and there was a concern that if she went into labor in their small town and there were complications, the baby would need to be air lifted to Chapel Hill and she would have to remain in New Bern, more than two hours away from their newborn. Adding to the challenges they were facing, Stephanie and Tim had a 15-month-old daughter at home. Stephanie continued on bedrest until July 21st. Evan McGuire was born weighing 5 pounds, 11 ounces and measuring 19 inches long. He was diagnosed with Renal Dysplasia, which means he had two kidneys, but only one was working. His right kidney had cysts throughout and his left kidney never fully developed. Stephanie said when she was able to finally see her son the tiny infant looked like a little old man. Evan remained in the NICU for one week. He was discharged and taken home where the waiting game began to watch and see, over time, how well his kidneys would actually function.
Evan’s first year of life was filled with many trips to the University of North Carolina Hospital in Chapel Hill. Eventually a nephrologist there created a plan for Evan’s first years of life. His growth would be watched; he would have regular blood work; and once every year an ultrasound would be performed to monitor the development of his kidneys.
Stephanie said, “Over time, Evan’s one kidney shriveled to look like a raisin and the other looked like a normal kidney in size, but had areas of dead matter throughout that looked like marbles. As Evan was monitored throughout the first few years of his life, our hope was his one kidney would grow to compensate for the nonfunctioning portion, but sadly it never did.”
Evan continued to have regular doctor appointments and annual trips to UNC. His medical team was pleased he was able to remain healthy and quite active. Over time, Evan developed a love for basketball, swimming, skateboarding and baseball. Throughout those years, he attended school, played sports, and from the outside, Evan looked just like his peers.
It was not until Evan turned 12 years old that the UNC kidney team started talking about the transplant he would eventally need. Stephanie and Tim were told there was actually a window of time when the transplant should ideally occur for the best possible outcome. To start the preparation process, Evan was prescribed a medication regimen (pills taken in the morning and at mealtime) that would protect his remaining kidney function. His blood test frequency increased for monitoring purposes and, most importantly, Evan was added to the inactive transplant list.
Stephanie said that when the nephrology team started to talk about Evan’s transplant in terms of sooner and not later, their concerns about finances became a reality. The family had good medical insurance, but both Stephanie and Tim wondered if they had enough money saved for the unknowns of the transplant journey they were facing with Evan. Stephanie remembers, “In one of our many meetings to start the transplant process, we were given a list of possible groups to help with fundraising. After looking through everything, the Children’s Organ Transplant Association (COTA) kept rising to the top of the list.”
A transplant social worker at UNC encouraged them to reach out to see how the organization might be able to help. On May 6, 2021, Tim sent a Get Started (COTAGetStarted.org) notification to COTA’s headquarters requesting more information. COTA’s Family Outreach Specialist placed a call to Tim who provided the details of their family’s transplant journey to date. Tim had been ruled out as Evan’s donor, and Stephanie was going through the testing process to see if she could donate a kidney to Evan. Tim explained the family lived about 150 miles from the transplant center and shared they were already making numerous trips back and forth with the expectation those trips would increase in frequency. He was grateful to learn COTA could help with a variety of current transplant-related expenses and those that would be coming later when Evan received a new kidney.
“Our final decision was made to move forward with COTA when Rick Lofgren called us to answer any questions and talk us through the process together,” Stephanie said. “For the president of any organization to take the time to personally call meant a lot to us.” On May 21, 2021, their signed agreement arrived at COTA’s office … the McGuire family officially became part of the COTA Family, and Evan became a COTA Kid.
The Children’s Organ Transplant Association (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.
A few weeks later on June 9th, a COTA fundraising specialist trained the family’s group of volunteers via telephone so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Evans Journey was launched, and the website was immediately available for online donations to assist with transplant-related expenses.
Tim and Stephanie quickly started to share information about Evan’s need for a transplant on the COTA-provided website, COTAforEvansJourney.com. They posted, “Our hope is for Evan to forgo any dialysis treatments, and go straight to transplant. A living donor transplant typically lasts longer and has a better outcome, allowing him to do the things he truly enjoys the most. Playing baseball, going to the beach, spending time with family & friends, and just being the fun-loving kid you all know him to be. When you start talking about transplant, pre and post doctor visits, travel and lodging, a lifetime of prescription medicines … not to mention all of the other transplant-related expenses … it is very overwhelming. Thanks to COTA, we have a way for family, friends and others to help along the way.”
Stephanie recalls that when they posted on Facebook about Evan’s need for a kidney transplant the small community where they live was ‘in shock.’ Close family members and friends were aware of Evan’s need for a transplant, but not the community. Most people would have never guessed that Evan had a serious health challenge. During the summer of 2021, the family let their community know they were seeking a living kidney donor for Evan, which resulted in several friends and family members going through the testing process to see if they were a match for Evan. Stephanie and Tim will never forget those selfless individuals who stepped up to be tested; it was a true testament of friendship and community support.
Another outward gesture of community support was the incredible success of COTA for Evans Journey fundraisers that were planned, organized and well attended in their New Bern community. Their COTA Facebook was regularly filled with information about COTA fundraisers that would assist with transplant-related expenses. Updates like the following became quite regular on the team’s online platforms:
“We have a NEW fundraiser starting tonight that was specifically requested and designed by Evan … Wristbands that say #EvansJourney and COTA for Evans Journey. A huge thank you to the baseball families who kicked off the fundraiser today and sold 60 in one day!”
“We want to say a HUGE ‘Thank You’ to the Morehead City Makos baseball team who held a COTA for Evans Journey fundraiser that raised $784.70!”
“Evan’s big sister, Molly’s basketball team sold cookies and cakes that raised $500 for COTA in honor of Evans Journey. Their coach told the girls, ‘This is what teamwork is all about!’”
According to Stephanie, “Our COTA team was incredible in organizing fundraising events to help with transplant-related expenses. The most amazing part was that Evan was able to be in attendance and be part of the events. He attended each and every one so he could tell attendees his story and say, ‘Thank You.’”
On July 6, 2021, Stephanie blogged on the COTA for Evans Journey website: “Big Day for Evan and me! Today was the first step to see if we are a match. We had to go to Jacksonville to have our blood drawn. It was sent off to UNC and in 7-10 days we will know if we are a match. This is just one step of many, but if we are compatible, we can move to the next step which is a complete physical evaluation for me. Evan has already been cleared for surgery!”
On August 4, 2021, Stephanie blogged: “As many of you know I have been matched with Evan for donation. The next step will be for me to have a full medical workup done. I will be traveling to UNC Chapel Hill on August 16th for a full day of testing. This is the last step of the process to be approved for transplant. Please keep sending prayers and good vibes our way.”
On October 7, 2021, she posted: “Back in July I passed all the health screenings including being the same blood type as Evan. We were so excited to learn I was a match for Evan and we wanted to share it with everyone. Recently, my living donor team met with Evan’s transplant team to confirm test results and compatibility analyses. It was determined that I am not the best candidate to donate to Evan. I have been cleared, however, to donate a kidney. I will be a perfect match for another hopeful family with a member who needs a kidney and is over the age of 18.
Evan and I are both now registered with the National Kidney Registry … me as a donor and Evan as a recipient. I will have my surgery at UNC, just like Evan. In return, Evan will receive a voucher that can be used when it is time for his transplant. Even though this was not our first plan, we are learning to live with Plan B. After all the goal is for Evan to receive the best possible match. Me not being his donor allows me to be his caretaker after his transplant. We are blessed to have such wonderful people in our lives who continue to donate to COTA for Evans Journey … THANK YOU!”
On Wednesday, March 2, 2022, Stephanie donated a kidney at UNC. She did not know much about who would be receiving this gift of life but learned her kidney was travelling to Virginia. Stephanie noted there was no better way to kick off National Kidney Month, which is celebrated during March each year.
On March 31, 2022, Stephanie posted: “On this last day of March, we would like to thank all the people who have made the call to be a living donor. We would like to thank all the people who have checked the box to be an organ donor. We would like to thank all who spread the word about kidney disease and provide support to families like ours. Thank you all! The McGuire Gang.”
Evan continued to live his life to the fullest, which included playing baseball, going swimming, playing video games, finishing 8th grade and having fun with his friends. In June 2023, Evan’s status was changed to active on the national transplant waiting list. But Evan did not have to wait very long. On the morning of June 29th, the McGuires received a call letting them know of a possible kidney match for Evan. Stephanie remembers quickly packing a bag and heading to UNC Chapel Hill to get him settled in. At 10:20 pm they were told Evan would be receiving his new kidney within the next six hours.
On June 30, 2023, Stephanie posted: “Evan is out of surgery and doing well. Once the kidney was placed, it ‘pinked up’ meaning it took blood flow and seems to be working well. Evan’s body now needs to figure out which kidney to use. After transplant the new one will take over and the natural one will stop working. Now it’s time to rest and heal.”
On July 8, 2023, Stephanie posted: “We are home!!!”
Today, one year post transplant, Evan is thriving and has finished his first year of high school. When asked what his favorite things are, he says, “Baseball … Hanging out with Friends … Video Games … and More Baseball.” Evan simply loves being able to live life to the fullest and appreciates being able to (mostly) live like other 15-year-olds who are soon to be turning 16 and getting behind the wheel of a car. Stephanie and Tim continue to appreciate their amazing team of COTA volunteers who raised more than $100,000 for a lifetime of transplant-related expenses.
“When you are sitting in a doctor’s office hearing the details of your child’s medical issues, and words like ‘transplant’ and ‘anti-rejection medications’ come up, it is all very hard to hear and you feel like you have lost a little control over your life,” Stephanie and Tim said. “When we teamed up with COTA, it gave us a little bit of control and a lot of HOPE. With COTA, we could share Evan’s transplant journey with our community, ask for help and ask for friends and family members to be part of our team. That allowed us to gain back a little control of the situation, which at times felt like it was spiraling out of control.”
Stephanie and Tim know 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 McGuires, navigate their transplant journeys … for a lifetime.
“Through COTA’s fundraising guidance and expertise, our volunteers inspired and motivated our community to be an important part of Evan’s journey,” they said. “There is so much thought and energy and preparation that goes into the transplant itself. At times, it is all-consuming. But it is hard to prepare for ‘the after’ and ‘the lifetime of after.’ The lifetime of medications … the lifetime of doctors’ appointments … the lifetime of worry. Knowing that COTA is there for a lifetime is priceless.”
Now being able to fully imagine Evan’s future is also a priceless gift. Stephanie and Tim hope he will be able to do all of the things he dreams about doing. They describe their son as a “very athletic kid and a good student with a kind-hearted soul.” Evan’s journey of life has just started and they cannot wait to see all of his great accomplishments and to witness how the story of a selfless gift will inspire others.
“So many people simply wanted to do something to help, and COTA made that possible in a very meaningful and inspirational way. We will be forever grateful,” Stephanie and Tim said.
