Our Story

Kennedy was diagnosed with OTC Deficiency, a type of Urea Cycle Disorder, this past winter. This amazing little human is our world, our hearts, and a fighter. She is our warrior baby (really a toddler now!).

Urea Cycle Disorders exist on a spectrum. This is a disease where the individual’s body is unable to properly break down and remove excess protein from the body. This causes the protein to build up, and it turns into ammonia, which is toxic to our bodies. This means that some people are at the mild end, having little or no symptoms, and others experience more intense and frequent symptoms. This is important and plays a part in Kennedy’s story for how we got here. Please feel free to continue reading below if you’d like to hear more of that part of our story.

The majority of Kennedy’s first year of life was “normal” and there were not any major red flags that something was wrong. Our journey really began on Thanksgiving 2020, two days before Kennedy’s first birthday. Kennedy didn’t eat well that day, but we thought it could just be teething or another mild illness from daycare. She woke up later that night and had vomited all over her crib. At that point we assumed she had gotten a stomach bug from daycare and didn’t think too much of it.

Fast forward a few weeks and Kennedy was still experiencing intermittent vomiting episodes. Daycare also mentioned that she seemed clumsier than usual and wasn’t eating great (compared to other kids her age). At this point we knew that these symptoms could be pointing to something else but some of it could also just be normal one-year old behavior. We started doing different tests around Christmas, about a month after Kennedy’s initial vomiting episode. Her initial blood work showed some elevated levels, but again, nothing drastic or overly concerning. Her ultrasound and upper GI study came back normal. We were referred to a GI specialist, who agreed that more testing should be done to rule out any other potential causes.

We went to Children’s on January 25th for an upper endoscopy and brain MRI. That morning she was her normal self, waving at people and smiling as the different nurses and staff helped get us checked in and started that morning. The doctor came back in late morning and said that the endoscopy had gone fine – Kennedy handled the anesthesia well and everything looked normal overall. Shortly after that the doctor came back in again and said she was sorry but that there was concern in regard to some of Kennedy’s blood work that was coming back from that morning and that they wanted her to be admitted to the hospital.

Kennedy’s INR (blood clotting number) was the number that tipped doctors off that something was wrong. It was very elevated, to the point that they were not comfortable with us going home. They still didn’t know what was wrong, but knew that it wasn’t safe for her to leave. Many doctors and specialists saw Kennedy that day as they tried to piece together the puzzle that would help us understand what was making her sick. That afternoon her ammonia level came back, and it was extremely high. Her ammonia was 294, with normal being 0-50. The team decided to rerun it to ensure it was an accurate ammonia level, because it’s a very sensitive test. Unfortunately the repeat lab came back just as high. This first night was awful, and so terrifying for us. We learned that brain damage can occur with ammonia levels above 200…many tears fell that night and many prayers were said.

Kennedy made it through the night and we learned we would be moved to the University of MN. At this point the geneticist suspected a Urea Cycle Disorder based on her blood work and her urine sample. However, due to the disorder going undiagnosed for so long Kennedy was now also in acute liver failure. She was moved to the U on Tuesday night and was placed in the PICU. After a long week and a half Kennedy was finally discharged on February 5th. Her liver was healing and we finally had an answer to Kennedy’s health issues. Her team got us set up so we would be able to follow her low protein diet and special medications at home. The hope was that she had a mild version of this genetic disorder, and that we could control it with her special diet and medications.

Unfortunately Kennedy had multiple episodes of hyperammonemia in April and May that put her back in the hospital. Her genetic disorder was proving to be more difficult to control than originally anticipated. Every episode of elevated ammonia puts Kennedy at risk for other health issues – seizures, brain damage, etc. At this point her team agreed that we should consider a liver transplant. A liver transplant is considered a cure for Kennedy’s genetic disorder…it will give her access to a better quality of life and will remove the risk of brain damage and other issues from the intermittent elevated ammonia levels. We understand the risk and dangers of the transplant, but believe this is the best option for Kennedy. We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses.

So, thank you. Thank you to everyone taking the time to read our story and donate to COTA in honor of Kennedy. We appreciate everything our friends, family, coworkers, and communities have done for us and continue to do for us. We appreciate it more than we can explain. It truly does take a village. And we are so lucky to have ours.

*We will do our best to update this page regularly as we are on this journey. It may be awhile before our next post, depending on when Kennedy actually has her liver transplant.

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.

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