Caleb's Story...
We were so excited when our baby boy arrived, and we got to welcome Caleb Tyler Lott into our loving home. As he grew, we could not believe just how precious our little boy was. However, we noticed that he was not making his “milestones” as most children do. When he was 9 months old, the testing began. Scared but determined to do the best we could for our son, we took him to several specialist in hope for a diagnosis.
After numerous MRI’s, blood tests, EKG’s . . . and 3 years later, Caleb was finally diagnosed with mitochondrial disorder. This disorder caused Caleb to have low muscle tone; he was not as strong as he needed to be. This made him work extremely hard just to do what other children do naturally, for example crawling and sitting up without propping.
Caleb had to do countless therapies in order to improve: PT, OT, aquatherapy, speech therapy, and vision therapy. He did progress; however, it was very slow. He worked diligently every day. As his parents, we wondered how he could be so happy all of the time when he had to work so hard. He was such a joy to be around that I always called him my little angel.
Knowing how important the therapies were, we worked with him at home as well. Therapy is very hard work, so we were constantly searching for NEW ways to disguise it as fun. A friend told us about hippotherapy.
Skeptical at first, we searched for a provider of this therapy and found Rein-Bow Riding Academy through the Therapy & Learning Center. We soon discovered the amazing benefits of this therapy. After only 2 sessions, Caleb progressed from the “w” crawl to the upright crawl. Even though Caleb was exhausted after getting off of the horse each time, he loved it!
Finally, a therapy disguised as fun!
Shortly after, we took Caleb for more therapies in Madison, Wisconsin. While we were there, he got sick and started having some new problems. We took him to the hospital. His physician wanted to do an MRI. Caleb was very upset and crying. My husband, Kent, walked with them to the MRI room trying to console Caleb. The doctor there told Kent that he needed to "get some perspective." Caleb got so upset that he threw up when they were giving him the anesthesia and he aspirated. They brought him back, but he coded 8 times that night. It is very frightening to watch your child code and his room be filled with people to try to bring him back.
After being in a coma for 24 hours, they discovered that his brain was no longer functioning. We were faced with the decision no parent should be faced with - whether or not to take him off the ventilator. We had everyone we knew praying for a miracle. We did not want our son existing by way of a machine. So we chose to take him off of the ventilator. My husband and I were both holding him as they unhooked the machine. He took his last breath in our arms. Our daughter, Logan Tyler, was born 5 weeks after Caleb went to heaven.
A few months later, Rein-Bow Riding Academy wanted to do a fundraiser in attempts to alleviate the financial burden of the program off of the families. Care and services for children with special needs and medical diagnoses can be so expensive. We were honored that they wanted to do it in memory of Caleb.
On September 16, 2023, we will have our 12th annual event called “Racing so They can Ride – In Memory of Caleb Tyler Lott.” We love that fact that there is a special day every year on which our son is remembered by others. "Neber Quit" was Caleb and his dad Kent's, phrase they would repeat when Caleb had to endure many hard things in his short, precious life. We hope he will inspire you to "Neber Quit" when life seems too difficult for you.
Written by
Celeste Lott, Caleb's mother
