COTA for Luke's Liver

Our Story

Meet Luke, our sweet and sensitive baby boy! Luke was born in March of 2021 and came into the world like a storm, literally arriving just a few hours after we were hunkering down in the utility room sheltering from tornadoes. Shortly after birth, Luke struggled with slightly elevated bilirubin levels and was diagnosed with two VSD heart murmurs. Otherwise, he seemed like a healthy boy who was growing every day!

Luke came home and was able to meet his big sister Emma, who was so incredibly happy to now have a baby brother. She loved him instantly! We started noticing that Luke didn’t have much interest in eating, was lethargic, struggled with reflux, and became very irritable. However, at his first follow up appointment, Luke was still gaining weight so there wasn’t yet much concern. Then we received the life changing call.

Luke was flagged as positive for Maple Syrup Urine Disease on his newborn screen. This is a disease so rare (1 in about 185,000 babies) that the pediatrician assumed it was a false positive, but sent us for further testing to be safe. If you google MSUD you’ll see that it appears to be an automatic death sentence. We were so scared and became hyper aware of anything we felt was abnormal. On day 6 of Luke’s life we completed the additional blood work but noticed abnormal brain activity that evening, so we drove back to our ER to be admitted. Luke suffered two seizures in the ER before we were moved to the NICU floor. 

It was official. Luke was a statistic, 1 in 185,000. 

Maple Syrup Urine Disease is a metabolic disease in which the body does not produce enough of a specific enzyme to break down the three crucial branch chain amino acids (proteins.) The buildup of one of these proteins, Leucine, is toxic to the brain. For Luke, his elevated levels caused brain damage before we knew of his official diagnosis. Levels of these amino acids can become elevated if too much protein is ingested, if a person is sick, stressed, in pain, or more. 

There are two treatment options for the disease: a lifelong restricted diet and cautious living or a liver transplant. Our family has decided that in order to eliminate the risk of future brain damage and for a better overall quality of life, the liver transplant is the best option for us. We are anxious every day about keeping Luke healthy and comfortable, almost obsessing over that dreaded Leucine level. Therefore, Luke is currently listed and awaiting his new liver.

We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA in honor of Luke.

There is one thing that remains true through Luke’s entire journey so far, we serve a God that is so, so good. Luke is here with us, he is stable and handling his medical formula well enough, and is meeting most of his milestones despite the brain damage. He is a miracle. God has provided for us time and time again in more ways than we can count and continues to lead us towards our destination. The overwhelming peace we feel about the decision to transplant Luke is supernatural and provided by our heavenly Father. We continue to trust Him and lean on Him with every next step. Our family is beyond appreciative of your prayers for our family and we feel extreme gratitude for the various ways we’ve been blessed and continue to be blessed. Our God is a God of Miracle, who keeps His promises, and who has called Luke to do great things.

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.