Sixteen years ago, I sat inside the NICU at Johns Hopkins Children's Center holding Connor.

At just over six pounds, he had tubes coming from everywhere. A pulse ox attached to his foot beeped incessantly (iykyk.) The outpouring of support for our family was humbling. That unwavering faith and interest in Connor inspired me to start my blog, All Heart. It was my way of sharing updates on Connor's progress; first diagnosed with a failing heart and ultimately Barth syndrome.

Over time, Connor's condition evolved, leading to a hectic life of doctor and therapy appointments, on top of a full-time career. All of that pulled me away from the blog. Instead, my focus shifted to the Barth Syndrome Foundation, and an intense desire to fundraise and raise awareness for this ultra-rare disease.

For years, we didn't know if Connor would even make it to 16.

Yet here we are, and since those 28 days in the NICU, Connor added a Neutropenia diagnosis which requires two injections a week, and his feeding disorder became so severe he had a feeding tube surgically placed in his stomach. One year after that, we received a frantic call from his middle school - Connor had collapsed during gym. Turns out he had had a seizure which lead to an epilepsy diagnosis, and yet another daily medication.

Connor continues to prove each and every day that he's 'All Heart.' The kid never gives up. He takes each new diagnosis and just gets it done. He isn't happy about it, and he'll let you know it. But, he is living proof that we can all do hard things. Connor is inspiring to us as parents and to his younger brother, Ryan.

So in honor of his 16th birthday, we're holding an 'All Heart' week of fundraising and awareness for Barth syndrome. Each day, I'll be posting facts about this ultra-rare disease. It is our hope that it will inspire you to do the hard thing... whether it's sharing Connor's story, making a donation or asking your employer to match your gift.

Our goal is to raise $20,000. 

We thank each and every one of you for showing up for Connor all of these years. It means the world to us. This disease is incredibly isolating, and yet we have never truly felt alone.

We are also planning an in-person fundraiser for the fall where you can celebrate with Connor. We will be seeking event sponsors for that event soon. Stay tuned.