COTA for JoJo

Our Story

Josiah, our JoJo, came into this world already fighting.

What started as a beautiful and hope-filled delivery quickly turned into something we never could have prepared for. Within a few days, we knew something was wrong. After a couple of weeks it was fairly evident that JoJo was critically ill and needed more care than our hospital could provide. He was transferred from a Level II NICU, to a Level III, and then to a Level IV NICU, where we were finally given answers.

JoJo was diagnosed with Gestational Alloimmune Liver Disease (GALD), a rare and devastating condition that causes severe liver failure in newborns. His tiny body was fighting a battle that most people never have to face, and despite aggressive treatment, his liver could not recover.

He needed a transplant to survive.

At just a few weeks old, JoJo was listed for a liver transplant. He was so small. So fragile. Babies like him often become too sick or too small to make it to transplant. We were living hour by hour, praying he would hold on long enough.

By the grace of God and the incredible work of his medical team, JoJo received the gift of life.

But a transplant is not a cure.

A transplant is a lifelong condition. It is trading one life-threatening disease for another complex, chronic one.

JoJo now depends on daily immunosuppressant medications to keep his body from rejecting his new liver. These medications come with serious risks and side effects. He will require frequent lab work, ongoing monitoring, and lifelong specialized care. Hospitalizations, complications, and the possibility of rejection are all still part of his reality.

This is not the end of his journey. In many ways, it is just the beginning.

As parents, we have had to learn how to care for a medically complex child at home while still navigating the needs of our other children and daily life. His medication schedule alone can take over an hour, multiple times a day. Every fever, every symptom, every change carries weight.

The financial burden of transplant is significant and ongoing. From hospital stays and medications, to travel, follow-up care, and unforeseen complications  

JoJo’s life is a miracle. His story is not over. And we will continue to fight right alongside him.