Our Story

Thanks for taking a moment to check out our website. To start, I would like to introduce you to our family. My husband Zack and I were married in August of 2013. One week after we were married, Zack was shipped off to Korea for two years. After his return and settling into a “normal” life, we became pregnant and in January of 2017 we welcomed our beautiful daughter, Rilynn into our lives. We wanted to share just how appreciative we are for each and every prayer, financial gift, or word of encouragement throughout Rilynn's journey with ARPKD and her most recent diagnosis of Heptoblastoma.

Not too long ago I was sitting in a noisy hemodialysis center watching the time countdown at what seems like a turtle pace. My daughter, who is now three, just fell asleep amidst the chattering and chaos of other hemodialysis patients anxiously trying to finish treatment. We thought two years ago we’d be in a better place by now; dialysis free, line-free, submerged in bathtubs, and wearing zipper pajamas. Instead, we’re still buttoning the endless onesies with cords attached to a recently bald-headed little fighter… but we couldn’t be more thankful to have overcome all we have.

Rilynn was diagnosed with ARPKD (auto recessive polycystic kidney disease) in utero when I was 20 weeks pregnant, deemed unsurvivable. ARPKD causes cysts to grow on your kidneys. In Rilynn’s case, they grew so large it was preventing her from being able to breathe on her own. I remember watching her frail little body lying lifeless in her incubator, breathing in the warm heat of the ventilator while preparing myself for the biggest fight of my life.

At a week old, Rilynn had both of her kidneys removed and began dialysis. She spent the first 2 months of her life hooked to a dialysis machine 24/7. Over the course of a year and a half, she got down to as little as 12 hours a day hooked to her machine. It was quite a task keeping a toddler entertained on a 2 ft dialysis ‘leash.’ She went through multiple surgeries for a feeding tube, central line placement, hip surgery, and dialysis catheter revision all before the age of 1.

At this point, I’ve lost count at the number of times we’ve been told she wouldn’t survive. From a 95-day NICU stay to beating stage IV liver cancer just last fall (2019) you could say she’s a living breathing miracle. You wouldn’t know she’s endured so much by watching her. Her happiness and joy continue to teach us how to live life to the fullest despite it all.

In August of 2018, we were less than a month away from Rilynn’s kidney transplant. She had spent a year and a half on peritoneal dialysis and we had searched for months for the perfect living donor to give her the gift of life. We found that donor, but we also found cancer… and our world stopped turning. I remember standing over the kitchen sink as I answered the call from the doctor telling us the cyst on her liver was indeed hepatoblastoma. My voice began to shake as I tried to hold it together to get my questions out. ‘Where do we go from here? Does she need chemotherapy? What stage is she?’ All the horrible thoughts piled in my mind but I was too scared to even ask them. I immediately called my husband home from work and the rest of the day is a blur of tears and heartache. A week later, we were in the hospital with a treatment plan, beginning the next phase of Rilynn’s journey.

Chemotherapy was not effective for Rilynn, it was keeping the cancer from spreading but it was not killing the tumors which had already grown. After a few rounds into chemo, it was decided her best chance at survival was to receive a liver transplant. She needed a full liver of her size in order to have what doctors thought would be a successful outcome. Knowing that someone else will be losing their child so mine can live is a very hard thing to think about.  

It took 9 months to receive that organ and 15 rounds of toxic chemo. The waiting was the hardest part. Watching your child deteriorate, lose their hair, weight, and energy while you sit back hopelessly, forever changes you as a person. On June 12th, 2019, we woke up in our hospital bed early in the morning with the news they had found a match for Rilynn and the tears kept flowing. The despair that had sunk in months earlier that we wouldn’t find an organ on time was finally over. I knew at that moment Rilynn had a fighting chance to survive.

One year later we were able to put a face and name to the little boy who saved her life. His name is Jackson. He was 4 years old when he went to be with Jesus and his parents chose to give us the ultimate gift of a lease on life.

I can’t imagine losing your own child and sacrificing being by their side at his last moment to save another person. It is the absolute most selfless act we can never repay his family for. Every day, we try our best to keep his memory alive. As we celebrated Rilynn’s first anniversary from receiving her liver transplant we chose to do random acts of kindness, as we think Jackson would have done. And we got so many other people to follow along because of him. His motto in life was, ‘Always say hi to strangers, be goofy and laugh often, love and include everyone, and give the best hugs and kisses to those you love dearly.’ We want to make sure his legacy lives on by choosing to spread his love and unconditional kindness we’ve heard so much about.

I know Jackson and Rilynn would have been best little buddies and it warms my heart to walk past his picture every morning as a reminder to never take a moment for granted.”

It took three years and ten months before Rilynn finally received her kidney, something she should have received the first year of her life. After receiving her liver and healing from that, we were once again ready for her kidney transplant. Our living donor, Tabitha Neal, had followed our journey from the beginning, and when we were looking for a kidney donor, she went in to be tested and in the end was our perfect match. Again, there are no words for this selfless act from her and her family. She put her life on hold to do this for Rilynn. In March of 2020 we had our date for transplant and COVID immediately put a stop to it, for our governor deemed this transplant was not essential. It would be another 7 months, October 27, 2020, before this journey of just short of 4 years finally came to an end and Rilynn received her kidney. Rilynn named her kidney Elsa, and Tabitha’s kidney adopted the name of Anna.

A liver transplant typically last a lot longer than a kidney however, as Rilynn is so young, she will probably need another in her lifetime. A kidney transplant is a treatment option that typically lasts 10 to 15 years until she would either have to return to dialysis or recieve another transplant. 100% of funds raised for COTA in honor of Rilynn assist with transplant-related expenses and COTA provides support to its families and patients for a LIFETIME. We hope to raise enough money to support Rilynn into adulthood and ease her financial burdens as she one days starts her own family and has a career that may have to be on hold at certain times to take care of her health. We cannot express enough how thankful we are to all who have donated and helped ease the financial worries at this time.

The Children's Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.