September 1, 2019 — September is going to be a month of celebration and joy for COTA’s Luhm Family of Little Elm, Texas. On September 26th the entire family, and lots of folks in their community, will be celebrating the two-year anniversary of Wiley receiving a life-saving kidney from his mom, Stephanie. This is a celebration that Stephanie and Wiley’s dad, Mike, only dreamed about just a little over two years ago. It has been a long journey for the Luhm Family, but one that seems to now be on the right track.
In June 2014, after 10 years of marriage and after a healthy and routine pregnancy, Stephanie and Mike were ecstatic to meet their baby boy who they had already named Wiley. But once Wiley was born he was immediately rushed to the NICU due to breathing difficulties. Oxygen helped the newborn, but it was clear something was very wrong. When Wiley was two days old he was transferred to Medical City Children’s Hospital in Dallas where Mike and Stephanie heard the crippling news — their precious baby boy was in End Stage Renal Disease (ESRD). In Wiley’s case, the ESRD was caused by a birth defect known as posterior urethral valve (PUV). PUV, which appears in 1 in 5,000 to 8,000 baby boys, is a condition in which an extra flap of tissue grows inside the urethra blocking the flow from the bladder, which prevents urination. Baby Wiley’s inability to urinate in utero severely damaged his developing kidneys.
When Wiley was only three days old he underwent his first surgery to have a peritoneal catheter inserted. Later that day, the three-day-old baby was placed on his first round of dialysis. For the next five weeks, he endured three more surgeries and nightly dialysis. On August 1st, Baby Wiley was released to go home with Mike and Stephanie for the very first time. Throughout his first months at home, Wiley had to undergo many lab draws and be taken to numerous doctors’ appointments.
The Luhms were very aware that ultimately Wiley needed a new kidney for long-term survival. While they waited for the baby to grow and gain weight, Stephanie and Mike became quite proficient at nightly dialysis, daily weigh-ins, vital checks and getting an infant to take a host of medications. This was their life throughout the fall of 2014. In January 2015, Stephanie found the name of the Children’s Organ Transplant Association on another kidney mom’s Facebook page and started doing online research. In early February, Stephanie called COTA to learn more and to ask many good questions about how COTA might be able to help. In late May, Stephanie and Mike returned the paperwork and officially became part of the COTA Family.
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. Another plus? COTA funds are available for a lifetime of transplant-related expenses. In late July 2015, a COTA fundraising specialist trained volunteers in the Dallas and Memphis (TN) areas for the COTA campaign in honor of Wiley L and walked the volunteers through the entire COTA fundraising process.
According to Stephanie, “COTA was there for us from the very beginning once we decided we needed their support and guidance. We were contacted immediately by COTA representatives who were eager to help us on our journey. Their encouragement, expertise and ideas for fundraising helped our COTA volunteers get the ball rolling. We could contact COTA at any time if we had any questions. COTA representatives were (and are) always readily available and always have the necessary answers to our questions.”
In January 2017 Wiley finally reached the required weight and was referred to the transplant team to begin the workup process. Stephanie remembers, “When we started the transplant workup process we had many meetings and appointments. One of the meetings was with a transplant financial coordinator who specifically asked us if we had the financial means to follow through with the transplant and all the long-term medical expenses. When we explained that our friends and family members were already raising funds for COTA in honor of Wiley, she immediately stated, ‘That is perfect.’ Our transplant financial coordinator described COTA as a wonderful organization and told us we were most definitely doing the right thing by working with the team at COTA.”
It was at that moment Stephanie and Mike knew COTA truly was recognized as the trusted leader supporting families throughout the transplant community. The COTA in honor of Wiley L team of volunteers worked steadily to plan events and promote online fundraising using a free website COTA provided. Over the course of a year, these COTA volunteers raised more than $100,000 for a lifetime of transplant-related expenses.
In early May 2017 Wiley was approved as a kidney transplant recipient and was placed on the United Network for Organ Sharing (UNOS) waiting list. It was also at this time that any potential living donors could begin to be tested. The day Stephanie and Mike were told their tiny baby boy would one day need a kidney transplant, Stephanie knew she would do anything to be his living donor. She had a sense that one of her kidneys would be the best kidney for him. Without hesitation Stephanie started the living donor workup. After months of testing and a lot of waiting, Wiley’s mom was approved to be his kidney donor.
“When we first started the workup process for a potential donor, at no point did we worry about the financial burden that two patients would have on our family – thanks to COTA. We went full steam ahead knowing that I could provide him with a perfect kidney, and COTA funds would be available for mounting transplant-related expenses. Mike only had to worry about taking care of his two loved ones instead of worrying about how the bills were going to get paid,” Stephanie said.
After being on dialysis for 1,179 days, Wiley received his Mom’s kidney … and his second chance life … on September 26, 2017. It was a dream come true for Mike and Stephanie. For months they had dreamed about Wiley’s new life — going to bed without being hooked up to a machine, taking a regular bath like other toddlers, being able to go swimming like the other kids in the neighborhood and simply feeling better and having more energy.
The transplant was a success. Stephanie was released from the hospital three days after the transplant and Wiley was released to home two weeks later. On October 9, 2017, the Luhms were together at home with no dialysis, no tubes, no machines; they were for the first time simply a normal family.
According to Stephanie, “COTA made fundraising easy. The support we received through COTA fundraisers gave us so much motivation and let us know we were not alone on this journey. Contributions were even received from people we did not know who had found out about Wiley’s story through COTA.”
There is no cure for kidney disease. Wiley will probably need multiple transplants and will be on numerous medications for the rest of his life. That fact adds a layer of anxiety for many COTA parents. For Stephanie and Mike it also brings fear-filled questions to mind: What will happen to our son when we are no longer around? Will he be able to get a job or have insurance with this medical condition? How will he ever afford his own medical bills? These are terrifying questions, but according to Stephanie, knowing COTA funds are available for a lifetime puts those fears to rest.
“The Children’s Organ Transplant Association gave us hope and provided the support our team of volunteers needed to successfully raise funds for transplant-related expenses. COTA also gave us a sense of peace because we have not had to worry about the financial struggles that are typically part of a family’s transplant journey. Having COTA by our side has allowed us to focus on Wiley’s health and to seek the best medical care possible … for a lifetime.”
Wiley has been doing fantastic after his transplant, but in December 2018 he became sick with his first major illness post transplant. Because of the immunosuppressant drugs he has to take to keep his kidney healthy, his body cannot easily fight the simplest of illnesses. Wiley contracted a virus that normally runs its course within 24 hours; however, it had a major effect on Wiley and his body could not fight it. It put him in the hospital for five days in December and then again for 20 days in January 2019. He was in the hospital longer for this stomach bug than for the kidney transplant. But again COTA was there for this family.
According to Stephanie, “Once again we only had to worry about his medical needs and not about the bills associated with a 25-day hospital stay. Wiley’s transplant journey did not end once he received his new kidney, and this is something we finally had to face. But that is why we have placed our unwavering trust in COTA … a safety net that will be there for a lifetime.”
Since the early 2019 ‘hiccup,’ Wiley has done great. He regained his strength and had an amazing spring and summer. Wiley has become quite a swimmer and his getting ready to attend Pre-K full time. The Luhms feel so blessed to see how much he has grown and developed.
It makes Stephanie and Mike smile to know Wiley’s life is now definitely on the right track!