Colton the LUTO Ninja Warrior

My cousin Jeremy and his wife Lisa were pregnant with their second child, Colton, when he was diagnosed with a rare medical condition called LUTO in utero. Due to the difficulty conceiving and the strong love they had already developed for their son, they knew they had to do everything they could to give Colton a chance. Borrowing from their retirement and depleting their savings, they set out on a journey to bring him to term and thrive beyond birth. With Colton's condition even more severe than anticipated, the medical costs have become a heavy burden. Due to a recent setback they no longer have the insurance benefits that they were relying on. With the high cost of Cobra and the short term they will have to use it, the costs of Colton's life saving medical care will become unbearable. Jeremy and Lisa are in need of prayers and financial help for past, present and future medical costs and travel expenses. Please know that your love and support during this difficult time is immeasurably appreciated.

Colton's Journey:

Hey everyone, Colton here with the story of how I got here and what my future looks like. In January of 2017 my mommy and daddy were so excited to add me to their family along with my sister Sienna. Mommy went to her doctor to check me out, but they saw something that made them say "wowzers!!!". My bladder was 7 times the size that it was supposed to be and mommy had no amniotic fluid, that would help my lungs develop and help me breathe. I was diagnosed with LUTO (Lower Urinary Tract Obstruction). It's a blockage where my urine couldn't come out and it made my kidneys, bladder and lungs yucky. Her doctor said she hadn't seen a case in 8 years and the babies she saw in the past didn't make it. The only chance at survival would be fetal surgery where they put a shunt in my bladder to help me go to the bathroom, but most people don't even qualify for it due to kidney damage. They started their search for someone to help save me.

They found a world renown fetal surgeon who would become my hero- Dr. Quintero. After doing a bladder tap at 17 weeks (the Dr. stuck a long needle in mommy's belly into my bladder and extracted urine) they got the approval for surgery. Long story short, I got to go to Chile for fetal surgery (yes, I'm a world traveler). Surgery went well and the shunt was placed and amniotic fluid started flowing...until 29 weeks where it disappeared. Mommy was admitted to the hospital for almost 2 months and at 37 weeks she delivered me. My lungs and kidneys weren't doing too hot so I got to ride in a helicopter to Miami and went to Nicklaus Children's hospital where I got my own nurses and own room. They call it I.C.U. At 1 week old I got surgery to put a catheter for dialysis in, take out the shunt and check out the blockage. Unfortunately, the blockage was a very rare one called urethral atresia and couldn't be fixed. My Doctor says it's so rare that most babies who have this don't survive birth. He said I was a miracle! So they put a hole in my side called a vesicostomy where my urine comes out until they can fix me. Surgery was hard on my body and my ventilator gave me trouble and I almost didn't make it. But I did!! I started dialysis and started getting better. I am on the road to recovery but I will need a kidney transplant and at least 2 more surgeries, maybe more. My parents have spent tens of thousands of dollars on surgery and all of my hospital stuff. My mommy and daddy and grandma take turns visiting me. Someone is always here. On days with my daddy, he has to get up really early and drive back to Palm Beach for work. Everyone takes turns taking care of my big sister. I can't wait to play with her one day. Once I am moved out of I.C.U., I won't have my own nurse and someone will have to stay with me all of the time. They say after that, I'll finally get to go home soon. When I get there, my mommy and daddy will have to give me dialysis at home. I will need equipment and supplies until I am able to get my new kidney. My mommy hasn't been able to go back to work since I was born and now she can't. I will need full-time care until I have the kidney transplant. We appreciate any and all of your help and support to get me a new bean (kidney humor)! My mommy and daddy have been working so hard to take care of me. I know they love me and I am fighting to make them proud!!