COTA for Kidney Warrior Leaven

Our Story

Leaven Oliver Wilson aka Chicken butt

Born Jan 21st, 2011. And might I say in a rush. He was a planned delivery, but once we got to the hospital that morning he was coming. Our doctor couldn’t make it in time from across the hospital so a doctor in the room next to us had to pretty much catch him. He’s had my heart since day one. He was a great baby, slept good, fed good. But we noticed things like peeing through diapers a lot. We brought this up to his doctor and were told, oh he’s fine that’s normal in a lot of babies. He was our second child so we could only compare him to his older brother. So we wrote it off and just made sure we always had a change of clothes. As the years passed, we were seeing bed wetting constantly and once again brought it up to his doctor because we saw him drinking a lot of fluids. I know what comes in must come out. But it was a concern. My first thought was possible diabetes. I had him checked every year and it was always negative. Besides that, he was a healthy active boy.

Summer of 2021 the boys flew to have the summer with their mother. I get a phone call early June from his mother saying Leaven was saying his back hurt. We wrote it off as playing, might have pulled something. So some Tylenol and water and keep an eye on it. June 21st, 2021, that morning their mother calls me saying his back was still hurting and I told her after she dropped off our oldest to fly home in Tennessee for summer camp to take Leaven to urgent care and let’s see if it’s something. That never happened – I got a phone call later that day that Leaven was falling down screaming in pain at target. Rushed to the ER via ambulance. I’m getting phone calls about what’s going on; I’m looking for flights to get me out there asap. ER gets his pain down, specialists are coming in and he is moved to intensive care.

June 22nd, 10am I land and get to the hospital. I never left my son’s side except to run and get things for him. Things to take his mind off the situation or make him more comfortable. His mother helped me out getting there last minute and made sure all my clothes were washed because I packed 3 outfits, grabbed his giraffe and got on the plane. I slept in the chair and couch in his room until July 3rd when he was released.

Denver Children’s Hospital has been very good to us throughout this hard time in our lives. All three of us did genetics testing to find out what it was due to all the tests they were doing were not giving us answers. A month later we got our results stating he had Nephronophthisis, which is a disorder that affects the kidneys. It is characterized by inflammation and scarring (fibrosis) that impairs kidney function. These abnormalities lead to increased urine production (polyuria), excessive thirst (polydipsia), general weakness, extreme tiredness (fatigue), and stage 4 kidney failure. This is when we were told he would need a transplant. I couldn’t process this in my mind. It didn’t feel real. Very much like a nightmare that I couldn’t wake up from.

We’re doing our best to help Leaven understand what’s going on and I think he has an idea. He is very scared of surgery, but we’re doing our best to show him he has a great team. But I can’t stop his fear because I don’t even know how to curb my own fear. Not a day passes I don’t think of my son, text him, call him, send him dumb stuff from TikTok. I look forward to this process to be mostly done with so he can get back to a semi-normal life. More energy and not worried about his problems he has now. I’m very thankful for the support COTA has offered us to help with this hard journey in our lives.

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.