RIP Julie: HLHS, 38

One of the oldest HLHS Adults, in the US, has recently passed away at 38 years old. Julie from Alaska. She was in hospice two years ago given 3 months, 6 months at the most, to live. Once she got out, with the time she thought she had left she sold all of her stuff, traveled, and wanted to see her family and friends that were important to her. This is what she told me, and what I saw on her Facebook. I also spoke with her mother. She has been very sick for a long time, and I know she was a very giving, kind person.

This photo is very powerful to me. It was taken a few months before her death. She knew she was going home to be with Jesus.

Pic: Nov. 2018

Fly high Julie <3

Please pray for her family. This is very very sad and never easy to process. No matter the circumstances, it is always very hard to lose a CHD sister or brother. Especially with the same or similar CHD as ourselves.

The oldest HLHS Adult living today, in the US, that we know of, will be 40 years old next week. Below her, to our knowledge, would be Lena Romano, 35, Maribeth, 34, myself, Gabrielle, Jeni Busta, - we are 33 years old. As far as others, I'm not sure if they want me to list their names and ages. If you know of any other HLHS Adults past 30 please share!

I understand this is hopeful to know our ages, which is why I am listing them. Please please understand we all live our lives differently. All CHD Adults have different bodies, different circumstances, come from different backgrounds, and fight different battles. We will all die from something different and the way we live our lives, the care we receive, and who does our surgeries will be a huge contributor to that.

It's very important to me that I include that information "in the US, that we know of," because there could be someone out there in another country, or even the US, with HLHS that may not want to be involved with social media, CHD statistics, or CHD life and I can understand that. Of course we would all love to know concrete facts, but we may not ever get that information.

However, what we can do is we can be thankful and hopeful with the information we do have.

We can learn from each other and keep inspiring each other, families, and medical professionals by sharing our stories if compelled to do so.

You are in our prayers and thoughts Morefield family and I hope you are now one more angel that will help us down here! Make sure to find Andrew, Mike, Steve, and all of our other CHD brothers & sisters. I hope there is a kickass CHD community up there laughing, floating around, and living in the freedom of a flawless body. <3

If you are a CHD Adult or family member of a deceased CHD Adult, and interested in sharing your story for heart month on, please e-mail: ... because change begins with a story.

In honor of MLK Day today as well (covering everything in one post today), I leave you with this:

"Our lives begin to end, the day we become silent about things that matter." -MLK Jr.

God Bless everyone. <3