Celebrating Life with Riley - National Donate Life Month

Riley was our first born. We thought he was a perfectly healthy baby boy. At his 15 month well child checkup he had an ear infection and I took him back a week later to make sure it had cleared up. During that appointment while listening to Riley’s heart the doctor said she heard something unusual and wanted another doctor to have a listen. Then another doctor was brought in to listen. They told me his heart beat was not sounding normal and wanted us to take him to a cardiologist to be safe. I was immediately worried but they assured me it was probably nothing but better to be safe than sorry. We had no heart conditions in our family that we knew of, especially nothing in children. 

So the following week my husband and I took Riley to see cardiologist Dr. Bezold. They did an EKG, echo and chest x-ray. And at the end of those tests, the doctor and nurse came in and said they had some very serious news to give us. The doctor said Riley had Restrictive Cardiomyopathy and there was no medications or surgeries available to treat this specific heart condition and that his only chance for survival was a heart transplant. He told us he had maybe two years to live without a new heart. He said he was shocked Riley wasn’t really sick and in the hospital already. For reasons we don’t know, Riley always looked and acted like he was a perfectly healthy baby boy. We got two more opinions after his diagnosis and all three hospitals told us the same thing. We listed him on the transplant list at Cincinnati Children’s Hospital where he received his new heart ten days later at the age of 18 months old. We were fortunate to not ever see our son seriously ill before his transplant but it also made the whole thing a lot harder to believe and understand. We have had our ups and downs over the past 14 years, his next anniversary is coming up this month on the 28th, it will be 15 years post heart transplant and Riley is doing amazing! He just turned 16 and got his driver's permit! We are so blessed to still have him and are thankful for his donor family everyday. 

After his transplant we did genetic testing and found out Riley’s dad Nathan has Hypertrophic cardiomyopathy and he started medication and had an ICD and pacemaker put in.  

Maggie goes to Washington

Merriam-Webster defines an advocate as “one who supports or promotes the interests of a cause or a group.” While this is an accurate and succinct definition of the word, being an advocate is as complex as it is gratifying, as frightening as it is empowering, and as draining as it is rewarding, and every advocate’s experience is as unique to them as their reasons for sacrificing so much of their time and energy for it are.  My reasoning?  HER.  My beautiful little bundle of fire and sass whose sweet smile lights up every room and whose full bellied laugh makes it impossible to stay upset with her when she’s being mischievous is my motivation and my constant.  She is my gentle, and sometimes not so gentle, reminder that not only her story but mine as well matters.

                A year ago, I had the opportunity to advocate for Evelyn and the CHD community on a national level in Washington D.C.  To say that I was terrified and intimidated would be a gross understatement, and I made my usual joke to Christy, with Kerrington’s Heart, that my fear of public speaking made me an unusual PR Director.  Still, I’d been feeling moved to participate in the Conquering CHD Legislative Conference every year since Evelyn was born, so I buried my fear under too many coffees and an eagerness to make a difference and headed to the US Capitol.

The first day of the conference was intense to put it mildly. It was informative and emotionally charged and really emphasized the responsibility we were carrying as representatives of all heart families from each of our states.  We heard from Congressional aides about what to expect and were given their assurances that the people we would be speaking with HEAR us and that our words and us being there carried much weight with them.  We also heard from CHD warriors about their journeys and what our passion and presence meant to them.  We heard from a nurse and a mother who told her heart wrenching journey of losing her child to CHD.  By the end of the day, there wasn’t a dry eye in the room and you could feel how charged the atmosphere had become with renewed fervor for our cause.

The second day of the conference was comprised of our actual meetings at the Capitol.  I was a jumble of anxiety but knowing that my fellow advocates would be with me and that we would get through it together bolstered me, while thinking of Evelyn and the many CHD children who were counting on me to be one of their voices, gave me the courage I needed to calm my trembling nerves.  The meetings were incredible and empowering and every new person who I spoke with just fueled my passion for conveying the importance of what we are fighting for even more.  Every person we met with asked questions not only just about CHDs in general but about each of our children as well.  It was a long day full of walking all over the Capitol, sharing information and journeys, and sometimes even tears, but when I left the Capitol building after the last meeting, I felt energized in spite of the physical exhaustion, knowing that I had made a difference, that WE had made a difference.

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This year we will be taking a team, of those most interested, to Washington (Virtually). We ask that only those who can attend, register. Please register at the link below. We will then provide you with all the necessary information to attend the virtual event! Deadline is Friday, February 12th to register with Kerrington’s Heart. If you would like to purchase tickets please visit the Conquering CHD link below.

Registration is required for the Conquering CHD Virtual Advocacy Conference.

Advocacy Conference + Pre-Conference Health Disparities Meeting

• $25.00 per attendee

• This ticket includes virtual admission to pre-conference meeting, advocacy conference day one, and advocacy conference day two (legislative visits)

• Due to the cost of scheduling visits, registration is non-refundable after January 1, 2021

• Attendance at Advocacy Conference day one is required to participate in Advocacy Conference day two

Advocacy Conference ONLY

• $25.00 per attendee

• This ticket includes virtual admission to advocacy conference day one and advocacy conference day two (legislative visits)

• Due to the cost of scheduling visits, registration is non-refundable after January 1, 2021

• Attendance at Advocacy Conference day one is required to participate in Advocacy Conference day two

Click here to see the agenda: Agenda Virtual 2.1 (conqueringchd.org)