COTA for Jonah's Journey

Our Story

On November 30th, 2022, at just 5 years old, our sweet miracle boy, Jonah Mark, was diagnosed with a rare heart disease. One that has no cure. The only chance we have at saving his precious life is a heart transplant. And the hope and prayer that one will come before it’s too late.

On Sunday November 26th, almost exactly one year since Jonah’s diagnosis, at 4:45am he came into our room screaming and crying, then went into cardiac arrest, collapsed onto our bedroom floor and was completely unresponsive. We had to administer chest compressions on our son and call 911. Jonah was rushed to our local hospital by ambulance and then shortly after life-flighted to the PICU at the Cleveland Clinic to his heart team 2 hours away from home. 

The day he went into cardiac arrest, Jonah happened to be wearing a Zio patch heart monitor again because the heart episodes and symptoms he was having over the past year were progressing. We were trying to catch one of his bad night episodes on monitor. Little did we know we would be catching the worst one he ever had and hopefully will ever have. He went into cardiac arrest for 3 minutes. It started with an early extra beat that led to Vtach/Ventricular defibulation/Vfib. When you go in Vfib, it is lethal. During ventricular fibrillation, the lower heart chambers contract in a very rapid and uncoordinated manner. As a result, the heart doesn’t pump blood to the rest of the body. Ventricular fibrillation is an emergency that requires immediate medical attention. It’s the most frequent cause of sudden cardiac death, which is why he came into our room, collapsed and technically died. 

The doctors cannot believe he came out of it at all, and they also cannot believe he is neurologically ok. Right after it happened, he was “not there” for about 4 hours. The fact that he came back to us completely “Jonah” was a miracle. His doctor said it was 100% nothing short of a miracle and when they see someone’s heart do what Jonah’s did, they usually do not come back from it at all.

This is why on November 29th, 2023, the team pulled us aside and said we will not be leaving the hospital to go home. Jonah will be worked up for heart transplant and listed immediately. 

He is now on a beta blocker and they had to increase it once already. We cannot let his heart rate go up as high as it wants to go right now. We cannot let that happen again. So, we pray and we wait. In less than 24 hours we packed up our family of four and we moved our entire life into an apartment 10 minutes from the hospital. Here is where we will remain until a heart comes. The typical wait time right now is 9-12 months. We don’t know how long it will be, but we are asking that you would join us in hoping and praying for a Christmas miracle for our bubbies!

Thank you for loving on our family … we could not do this without you! Jonah has a big life to live and a big story to tell. And we are here for all of it. #jonahsjourney #joyinthejourney

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.