COTA for Jonah and Lindsey

Our Story

When I was 13, I was diagnosed with a rare, incurable heart disease, Restrictive Cardiomyopathy (RCM). The only hope with this diagnosis is a lifesaving Heart Transplant. I was listed when I was 16, we moved into the hospital 2 hours away from home and we lived there waiting in the Cleveland Clinic for 3 months. My perfect heart came on July 24th 2001! My miracle and second chance at life!

Years went by and in 2005, I had the amazing opportunity to meet my donor family on the Tyra Banks show. On the show, I shared with them my dream of wanting them to one day be a part of my wedding. They said “wherever, whenever, we will be there”! On January 19th, 2008, our wedding day, my Dad and my donor Dad walked me down the aisle. My Mom and my donor Mom lit our unity candle together. There was not a dry eye in the place that day. It was a true fairy tale!

Many years went by and we experienced 9 very difficult years of infertility. Finally after doing IVF, ultimately 3 cycles, we had our two amazing miracle boys. Our oldest son, Jonah Mark, was born in 2017, and then our youngest son, Isaiah Timothy, came along after dealing with secondary infertility, in 2021!

When our oldest son Jonah was about 3, we started noticing something with him was off. He couldn’t keep up with other kids, and at the time we really had no idea why and thought maybe he just wasn’t going to be an athletic kid!?

He would be just playing outside and running around with his friends and he used to stop, hold his chest and say his belly hurt and that he couldn’t run any more. I finally figured out that he meant his chest. I explained to him that’s the way everyone feels when they run. And we didn’t think it was anything more.

I was convinced at this point that he was developing asthma like my sister and I had been diagnosed with when we were young. He started getting these “episodes” where he would have to stop, hold his chest, and he said his heart would be beating really fast and his chest would hurt. His episodes got worse over time and that is what ultimately led us to get him checked by a cardiologist. We had no idea initially about anything with his heart or his diagnosis of restrictive cardiomyopathy. In fact I was entirely so sure it wasn’t his heart (though I knew something wasn’t right) I was already starting to make plans to have him seen by a pulmonologist to go with plan B because I was so sure it couldn’t be his heart.

All that time, we were never looking at him through the “heart” lens so to speak because of being told for so long that my heart disease was not genetic.

The icing on the cake for us, was in October 2022, he was in a taekwondo tournament. The building was uphill a little and he kept saying he couldn’t walk, then he was holding his chest, and crying saying he couldn’t breathe and his heart hurt. He was doubled over in pain and my husband had to carry him the rest of the way. That was it for me. That day, I contacted my original Pediatric Cardiologist. He said bring him in, we will take a look, but he also initially said that this really probably wasn’t anything with his heart. We never had reason to think that it possibly could be.

Diagnosis day. We went in for Jonahs first ever Cardiology appointment. While they were doing his first echo, it was taking a very long time, which most people wouldn’t have realized. The echo tech left the room, and then the Dr walked in. I knew the news was bad. They told me that he for sure had RCM – the same heart disease that I had. I literally just collapsed. It was harder to hear that he had it than it was to be told that I had it. My first thought was, now that there are two of us in the same family with the same diagnosis, is there 3 of us? I was a disaster thinking maybe both of my boys had it and all I could picture was both of them waiting for hearts at the same time.

Both boys and I did genetic testing. Thankfully everything came back normal for Isaiah and he does not have the disease. But Jonah’s did come back for sure, showing that he definitely had the same thing I did.

Fast forward a bit, and even though Jonah did have the same heart disease that I had, his Doctors were saying that the symptoms/episodes that he was experiencing were not correlating on paper or on any of his tests. Which was so confusing for all of us. They were not sure where it was coming from but kept checking and saying he was stable and to just keep coming back for appointments.

He was watched very closely for about a year at the same hospital, by my same Transplant Team that I had years ago. After tests, blood work, echos, ekgs, 2 catheterizations, putting him on baby aspirin and Lasix, heart monitors and more, they continued to assure us that he was stable, and said he would be years away from needing to be listed for transplant.

But his episodes weren’t only still going on, they were getting worse. When he had these “episodes” they would come on pretty fast, and it was worse when he was active, but would happen just the same when he was not at times, his heart rate would go up really high, sometimes he would get really flushed, and said his chest/heart hurt. It would go away very fast but it was almost impossible to move on because it was a daily reminder.

By November of 2023, Thanksgiving weekend, we wanted to try and catch his episodes in monitor, though we tried in the past and it showed nothing. We put another one on him to try and catch a night episode, as they had progressed. November 26^th at 4:47 am, Jonah ran into our room screaming and crying with the worst heart episode of his life and he collapsed onto our bedroom floor and went into cardiac arrest and died for 3 minutes. He was ultimately life flighted to the Cleveland clinic where they then told us what any parent never wants to hear.

That’s when it happened. I was told twice in my lifetime. I thought once was enough. Twice is too much. I felt like everything was moving and I was standing still. 

They said, we would not be leaving the hospital. They would be listing Jonah for heart Transplant and we would not be going home until after he gets his Heart. We were in complete shock. Those next seconds, minutes, hours and days were going to be more intense than ever in our lives.

The wait times are around 12 months. Jonah handled it all AMAZINGLY. He asked, ”Will I be here 100 days?” I didn’t know how many days we would be there. 2, 100, 500? Only God knew that. One thing I do know is that Jonah was born for this. I did not know that I was born with this heart disease until Jonah was diagnosed with it. Our stories and our lives are intertwined for a reason, and it is not finished! 

Because Jonah was wearing the heart monitor when he went into cardiac arrest, which is just crazy and unheard of, It was confirmed that Jonah died that day. Though we did not need any confirmation because we were there, and saw life leave our precious son in those moments. Adam administered chest compressions so perfectly. They said we saved his life. They are baffled by Jonah. His diagnosis didn’t match up with his symptoms, his progression, the way he presents. None of it added up to them or went the way they have ever seen. They also said they have never had a mother/child both diagnosed with Restrictive Cardiomyopathy. 

We told Jonah we would not be going home. We told him the Dr said that what happened to his Heart on Sunday, if it would have happened to someone else, they would not be here. We explained that we had to bring him back in the best 6 yr old way we could. He started crying. Then I said “soooo your basically Tony Stark” he had the biggest smile on his face and was cracking up. He loved that! He looked at me then looked at Adam and said in the most genuine way ever “Dad you saved my life”. My husband and God brought him back that day.

This kid is the real deal. He is incredibly amazing. He said “this is really big and scary but I got this because Mom already knows everything”. I may not know everything but you better believe I walked that kid through every single solitary second of this journey as I have already walked it before him. His beautiful story is being written. And I’m here for all of it as I know you all are as well. 

We are going to be launching The Children’s Organ Transplant Association (COTA) combined campaigns. COTA helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA has been there for me all those years ago, and they have been here for Jonah. COTA will be continuing this to help cover the transplant-related costs we have already endured and the insurmountable ones that we continue to have on a weekly basis, between both Jonah and me. COTA is a 501(c)3 nonprofit organization. It was huge for my Family then and it has already had the same impact on our Family now!

As I reached this incredible milestone of being blessed with the chance to celebrate 25 years of life, I feel so incredibly thankful, grateful and blessed beyond measure. I am forever thankful for both mine and Jonah’s donor families, for their selfless decision to be organ donors in their darkest hours. We strive every day to make them proud and carry on their legacy and live the best life we can possibly live! Thank you ALL for being there with us through our worst and our best, through it all we wouldn’t be here without you!

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.