March is National Kidney Month:
A Little Super Hero is Flying High Thanks to His Mommy’s Kidney
March 1, 2021 -- March is National Kidney Month, which is a month-long, awareness-raising grassroots effort to spread the word nationwide about the importance of kidney health. A South Carolina family knows all too well the life-saving difference a healthy kidney can make.
Lukas Brown was born in late April 2017, and on his second day of life a blood test revealed his tiny kidneys were only functioning at 20%. The baby was diagnosed with Bilateral Cystic Dysplasia and End Stage Renal Disease. Luke’s parents, Erin and Jeff, were devastated to hear the news. Luke’s sister had experienced no kidney problems and was waiting (somewhat impatiently) at home to meet her little brother. That would not be the case for some time because Luke was quickly transferred to the Neonatal Intensive Care Unit (NICU) at Levine Children’s Hospital in Charlotte, North Carolina, where he would spend the first seven weeks of his life.
Luke started dialysis when he was only a week old, and he survived four surgeries during his first month of life. Peritoneal dialysis did not work for the infant, but hemodialysis did, and his lab numbers finally began to stabilize in June. Erin and Jeff remember feeling their first sense of hope. On June 13th, Luke was discharged and was able to go home to South Carolina for the first time. Life remained complicated because the baby had to have hemodialysis treatments every Monday, Wednesday and Friday. However, November 2017 brought promising news. Erin and Jeff were told Luke’s kidneys were now functioning at a level that was sufficient for the baby to grow and thrive without dialysis. While overjoyed, they understood this was a temporary respite and a kidney transplant was inevitable for Luke’s long-term survival.
Erin remembers, “At the time of Luke’s diagnosis we were overwhelmed emotionally and financially. Being told our baby boy needed a life-saving kidney transplant changed our lives forever. While we wanted to singularly focus on the care of our son and our family’s wellbeing, we were very worried about the future and really did not know how we would manage the financial burden of his ongoing medical care and a kidney transplant.”
The first part of 2018 brought some ‘normalcy’ to the family’s life. While Luke had regular medical checkups, lab work and medications, the Brown family of four felt blessed to be under one roof in their Lancaster, South Carolina home. But in August 2018 they were told it was time to start preparing for Luke’s kidney transplant. Both Erin and Jeff started the testing process to see if either one of them were a match to donate a kidney to their precious little boy.
As Luke’s kidney transplant became something that was going to need to happen sooner than later, Erin and Jeff started thinking about the increased financial burden their family would be experiencing. They both felt a sense of relief when a transplant social worker introduced them to the Children’s Organ Transplant Association (COTA) and suggested they reach out to learn more about how COTA might be able to reduce some of their stress. Erin called COTA on October 31st and was able to quickly get answers to their many questions.
“When we were first introduced to COTA it brought us a sense of hope that we would be able to take on the financial reality of our son’s life-saving kidney transplant,” Erin said. “Finding COTA allowed us to focus solely on Luke’s health without worrying about how we were going to pay for his care.”
COTA received the family’s paperwork two weeks after Erin’s initial telephone call, and the Brown family officially became part of the COTA Family.
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, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
On November 12, 2018, a COTA fundraising specialist trained the family’s volunteers via teleconference because their key COTA team leaders were located in South Carolina and Ohio. The COTA staff member talked to the many teleconference participants about COTA’s fundraising process and shared information about fundraising templates, fundraising guidance and the no-cost website the volunteers and family would be given for fundraising and promoting the family’s story. This group of friends and family quickly got to work in two different states organizing fundraisers for COTA in honor of Team Lukas to help with mounting transplant-related expenses. These COTA volunteers worked nonstop to plan and implement creative COTA fundraisers that generated more than $45,000 for transplant-related expenses.
Erin and Jeff started using the COTA for Team Lukas website to blog updates to their large group of supporters.
January 13, 2019 – Happy New Year! Luke loves playing with his new train from Santa, eating strawberries, reading, playing outside and bath time. Last week was a busy week of medical appointments. He is continuing to grow so we will wait for our next appointment in February. Mom and Dad are still being evaluated as kidney donors. More tests are on the horizon.
March 26, 2019 – This month flew by. Luke is still working on gaining weight. He is 20 lbs. and needs to be at least 22 lbs. before getting transplanted. Luke continues with weekly speech therapy. It is spring weather here in the Carolinas and Luke loves to play outside and adores his big sister, Lilly. We will be discussing next steps with our nephrology/transplant team in early April.
We have an exciting (COTA) event on May 25th in Cincinnati – a COTA Summer Kick Off Party in honor of Team Lukas at The Original Montgomery Inn. Dinner provided, followed by music, drinks and fun!
May 8, 2019 – Super Luke turned two! He continues to be a happy, outgoing and energetic toddler. Reflecting back we are so proud of Super Luke. Six surgeries, more than 80 hemodialysis treatments, hundreds of lab draws, daily g-tube feedings and multiple other procedures. Physical, occupational and speech therapy. He continues to astonish us and his doctors every day. He is going to do amazing things in this world.
August 31, 2019 – Luke’s kidney function is declining and is currently around 13%. We have known since he was born he would need a kidney transplant but I do not think you are ever ready for your child to have major, life-saving surgery. This is going to be stressful. Unfortunately chronic kidney disease impacts the entire family and Luke’s journey has been quite a roller coaster.
On September 25, 2019, Super Luke received his life-saving kidney from his Super Mom (Erin) at Levine Children’s Hospital. The COTA website blog post on this day said, The update we have waited 2.5 years to give: Luke has a new kidney! He is resting comfortably and doing well. The new kidney is working perfectly at this point. While we are not out of the woods yet and Luke has a long way to go, we are cautiously optimistic that he is on the right track.
September 28, 2019 – Luke is still in the Pediatric ICU. We had a small scare on Friday but everything is back to normal now. He is still sedated and on a breathing machine. His labs are stable and he is comfortable. Erin was discharged this afternoon! She is already back home and resting. She is going to catch up on sleep and will be able to visit Luke tomorrow.
October 18, 2019 – Apologies for not posting in a while. Things have been hectic adjusting to post-transplant life. Luke is now home! He spent a total of 19 days in the hospital and handled it like a champ. He has been as happy as ever and you can tell he just feels like a new person. And his sister is happy to have her brother back. As for what’s next, Luke will go to the hospital three times a week for labs and to see the doctor. He is on a ton of medication to make sure his new kidney functions effectively. Thank you for all your help, thoughts and prayers. Your support really made the whole process easier.
According to Erin, “Our son needed life-saving care from the day he was born. He spent two months in the NICU, had dialysis treatments three times a week, needed ongoing lab work, had numerous medical appointments … and finally a kidney transplant with additional inpatient days for both of us. Even with good medical insurance we knew this was going to be a big financial impact on our family. Also, Jeff had to take 12 weeks of unpaid leave from his job to care for Luke and for me after the transplant.”
“We have been able to breathe easier through it all knowing that COTA was there, supporting us and helping to carry us through now and into the future,” Erin said.
March 13, 2020 – We are a day late, but Happy World Kidney Day nonetheless! We started blogging one year ago and it is crazy how much has changed. We are coming up on six months post transplant and all is going well. Soon Luke has a kidney biopsy, which is standard procedure, to look for signs of rejection. We will keep everyone posted. Also in these crazy times, please be mindful of people with weakened immune systems. While it may be just another cold to you, it could be devastating for others. Please be smart and do your part to mitigate the spread of this coronavirus!
Luke is a happy and thriving little boy. He loves bowling, building obstacle courses, reading, dancing, playing with his big sister and watching American Ninja Warrior. This April, Luke will celebrate his fourth birthday on National Super Hero Day -- which seems to be the perfect day on which this amazing little boy celebrates his birthday. He has, indeed, been a Super Hero throughout his transplant journey to date.
“We are so grateful for COTA’s support throughout our transplant journey. Luke has been through more in three plus years of life than most of us have been through in our entire lifetimes. Having COTA’s support has been a blessing for our family. Luke will likely one day need another kidney transplant; having COTA funds available lifts a huge weight off our shoulders. As parents we want what is best for our children. COTA’s support and guidance is allowing us to have hope for our children … for a lifetime.”
Erin and Jeff added, “Even with the uncertainty in our world, it is good to know our family can count on COTA through it all.”
March is designated National Kidney Month to raise awareness about the prevention and early detection of kidney disease. In the United States, kidney diseases are the ninth leading cause of death. More than 30 million Americans have kidney disease, and many do not know it. There are more than 100,000 people waiting for kidney transplants, with more than 661,000 people in the United States suffering with kidney failure. More than 3,000 new patients are added to the kidney waiting list each month; 13 people die each day while waiting for a life-saving kidney transplant. Every 14 minutes someone is added to the kidney transplant list. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor.
For more information about the Children’s Organ Transplant Association (COTA),
or to find a COTA family in your area, please email firstname.lastname@example.org.