COTA for Miracle Strong

Our Story

Miracle’s journey started very early on. Miracle was born in our home on May 9, 2023. We noticed right away she was not breathing on her own and her eyes were yellow. She was born lip and tongue tied and was unable to nurse and gain weight. As a mother, I felt that my daughter had an underlying condition but had no words to guide me. It wasn’t until Miracle went to her 6-week check-up that we were referred to a cardiologist for a heart murmur, where she quickly identified miracle as being jaundice. With urgency in her voice, she told us we needed to take her to the hospital. Immediately after that appointment we learned she had pulmonary stenosis, a narrowing aortic value in the heart that was just the beginning. What was supposed to be a quick appointment turned into an 8-day stay at the hospital. That is when she received a liver biopsy and her first blood transfusion. Miracle was diagnosed with Alagille Syndrome (ALGS) a rare genetic disease that progressively destroys bile ducts and can impact multiple organ systems such as the liver, kidneys, heart, brain, bones / growth and development and eyes.

After every effort, countless appointments, medications, labs, formulas, feeding plans, NG tube placement, and GTube placement our family knew that Miracle would need a liver transplant. Miracle turned 22 months when we began the transplant evaluations to see if she should be listed for a liver transplant. We found out a couple weeks after her evaluations that her liver team decided she should be listed, and we are awaiting an official date.

We have partnered with COTA for assistance with transplant-related expenses because her insurance does not cover all medical expenses, medication lodging, transportation, or meals. After Miracle’s liver transplant we will be staying at the hospital for two weeks or longer as recovery looks different for each family. Due to the magnitude of this surgery, we will need to avoid contact with large crowds like our family and friends because her immune system will be weak. There are many unknown factors we may have to consider, but we will continue to trust God. We would like to thank God for Miracle as she brings joy to everyone she meets. She has taught us all how to be strong. We thank God for each of your prayers, donations to COTA for Miracle Strong and partnership with COTA in honor of Miracle during this time.

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.