COTA for Max's Journey

Our Story

It was at 18 weeks of pregnancy during a routine ultra-sound that Kelly and Travis first found out that there were concerns with Max’s kidneys. Max’s kidneys were not developing properly and were measuring larger than they should. From that point on and for the rest of Kelly’s pregnancy, multiple ultra sounds were performed and various appointments with specialty doctors occurred. At 36 weeks doctors decided to induce Kelly as Max’s kidneys and bladder were continuing to measure larger. On July 3rd Maxwell Alan Gust came into this world crying with strong lungs and peeing just like any little boy should, all of which were excellent signs. He checked out as a healthy newborn baby boy and after a few days in the hospital, Travis, Kelly and Max headed home. Unfortunately, the start to their life as a family of 3 changed and after only one night at home, Max started showing signs of distress. A blood draw revealed that Max’s kidney function was elevated and it was advised that the family head straight to Children’s Hospital in Milwaukee. After multiple labs, testing and scans, doctors found that Max had developed Posterior Urethral Valves (PUV). The valves were obstructing and blocking the outflow of urine, causing Hydronephrosis and damage to Max’s kidneys. At seven days old Max underwent surgery to remove the valves. Though the surgery was a success, Max’s kidneys were damaged and his kidney function was deemed to be only 30%.

The first few months would give Max’s renal and urology teams an idea of what Max and his kidneys could endure and if/when he would need additional measures. Routine blood work, ultra sounds and doctor visits to Milwaukee became part of the new parent’s lifestyle. The first year was filled with many nerve-racking moments but it was also filled with joy as Max was growing and, much to his doctors’ surprise, thriving.

When looking at Max, most people wouldn’t know that he suffers from renal disease, much less renal failure. Over the last 10.5 years Max has continued to be resilient with his kidney disease and has never let it slow him down. He has participated in many sports like baseball, basketball and soccer and has enjoyed Karate for the last 4 years. He is also an active member of the Boy Scouts of America and wrapped up his first year of Lego League. Most people are unaware of what Max continues to endure: the medications, various doctor visits, blood draws, ultrasounds and surgical procedures. Over the years Max has learned to tolerate the aches and pains, loss of appetite, fatigue, nausea, and headaches and bare through the symptoms of kidney disease.

Over the last couple of years, Max’s kidney function has slowly declined. It has never been a question of “if” Max would need a transplant, but “when”. Within the last several months Max’s kidneys have begun to show signs of rapid decline. In the fall of 2019 Travis and Kelly were told that Max was in need of a life-saving kidney transplant. In November 2019 Max underwent evaluation and in December was approved to move forward with transplant.

After a long wait due to the COVID-19 pandemic, Kelly began her evaluation and testing for live donor transplant with Froedtert Hospital. Our prayers were answered on June 2nd! Kelly passed all evaluations and testing and she was found to be a match for Max. She will be donating her left kidney to Max on June 30th.

It is our hope that a kidney transplant will improve Max’s health and provide him with many more amazing years of life. We also know, though, that a transplant is not a cure for kidney disease, but is a treatment. Max will start a new journey after his transplant; he will be on immunosuppressant medication for the rest of his life so that his body does not reject the kidney. He will continue to endure doctor visits, blood work, scans and other tests to make sure his kidney continues to function properly. All of this and more to keep Max kidney strong for many years to come.

Our family has partnered with COTA to raise money in honor of Max to assist with a lifetime of transplant related expenses.

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.