COTA for Team Henry

Our Story

Our sons, Henry and Tucker, came into this world almost 7 weeks early – too early, even for twins. Henry arrived first, but he suffered a complication at birth that his tiny body could not overcome. During his stay in the NICU, he was diagnosed with Acute Kidney Injury. For almost two months, he stayed in the NICU. The doctors closely monitored his kidneys, hoping they would recover. Sadly, they never did. At 3 months old, he was diagnosed with chronic kidney disease, stage 4. We were told then that he would likely need a kidney transplant someday, and that day has come.

Henry’s short 2 years of life have been filled with challenges no child should have to face. He has had more doctor appointments, hospitalizations, blood draws, and therapy sessions than many of us will see in a lifetime. Due to kidney disease, he has faced numerous developmental delays and hardships. Below are just a few examples: 

Henry has struggled to eat since he came home from the NICU. He had difficulty tolerating formulas, bottles, food, required medicines and dehydration. Eventually, he needed a feeding tube placed surgically to keep him hydrated and growing. Along with this, Henry has struggled to keep food down. He has experienced vomiting, slow weight gain, slow growth and failure to thrive. He is finally on the growth chart for height and weight, which allowed him to be eligible for transplant. 

Henry experienced many developmental delays. He struggled to sit up, crawl, walk and talk. He finally was able to sit up on his own at 14 months old and walk at 22 months old. His speech is delayed compared to others his age. He has worked with therapists since he was 4 months old, just to get him to where he is today. He’s also recently been diagnosed with Epilepsy, which has added further setbacks to Henry’s progress. It’s been a struggle to see the obstacles he’s faced due to his kidney disease, especially compared to his twin brother.

Henry is on numerous medications, is followed by many doctors, receives semiweekly blood draws, and has seen many nurses and therapists in his short life. All these visits have kept him away from his family and playtime at home. There have been many times he’s been contained so he could not explore as a baby or toddler should. As a family, we have missed many visits, parties, and events because Henry was in the hospital or too sick to attend. 

Despite everything Henry has been through, he is the sweetest and most joyful little boy. He’s easygoing, full of life and can always make us laugh. He loves cars, books, being on the move and stealing toys from his brother. A new kidney will give Henry the chance to live a happier, healthier and more normal life. The kind of life we dream of for him.

Thank you for rallying around us and all the love and prayers during this kidney transplant journey Henry is on! 

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.