Know the Signs, Fight for Victory

Suely Johns – My Marfan Story

When I shared that my victory over Marfan and related disorders was “Finding a MarFriend and a MarFamily when we thought we were alone,” I was remembering one of the most amazing gifts this community has given my family: my son Ethan meeting Laura.

Before Ethan attended his first annual family conference in 2011, he was struggling—as any nine-year-old would—with the emotional challenges of learning about potential future surgeries and limitations.

But from the minute he met Laura at the conference, they quickly developed a very close bond. Laura, a retired teacher, understood Ethan’s smarty pants comments (as a 3rd grader at the time) and she loved Ethan’s sarcasm like nobody else could! He was her inspiration for the book that they started working on immediately.

They both loved to work on this project as they got to spend time together discussing their quirky ideas. I think the project helped Ethan quickly recover when he had surgery; it also gave Laura something exciting to look forward to on her difficult days. She had limited lung function and was on the waiting list for a lung transplant.

In the months after they met, Ethan and Laura would meet regularly to have brainstorming sessions about their book. And as their bond grew, we were all so happy when we heard the news that she was eligible for a lung transplant.

Ethan insisted on being there for her. And when he visited her in the hospital, they spoke about the terrible hospital food, surgery stories, and what Laura wanted to do with her new lungs.

Every passing hour after the surgery, Ethan asked for an update. From his own time in the hospital, he knew exactly what to ask. When we told him that she had complications and that she had to be on life support, he knew what it meant. When we told him that they had to take her off life support, he also knew what it meant. He was too smart for us to not tell him the truth.

When Laura passed away from complications, it was Ethan’s first experience of loss… losing a dear friend. He was angry, he was sad, he was scared that he could die too, he was mad at God, and he said he hated Marfan syndrome. He cried and he screamed. He talked about the unfinished book and that it was not fair.

All we could do is to sit with him, hug him, cry with him, and feel the pain with him.

During those difficult days, you find strength. You find your faith and your spiritual being grows and gets stronger.

I think that Ethan and Laura’s bond is a clear example that people cross each other’s life path for a reason. Laura had such a strong impact on Ethan’s life that I truly believe that she will continue to be his Angel in Heaven as she was his Angel on Earth.

Although we miss Laura every day, I see even now the impact her friendship has on Ethan. Laura gave us that victory through this community, and we’re going to keep fighting for the medical advances that will one day make sure other friends are not cruelly separated like Ethan and Laura were.

For Ethan and in memory of Laura, I want to say thank you to the Marfan syndrome and related disorders community — you make sure there is always a shoulder to lean on, a place to go for information and support. My family is proof that it means so much.

As you know, members are what make victories like Suely and Ethan’s possible. If you haven’t already, we hope you’ll consider making your 2014 membership gift today.

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Suely Johns, of Valencia, CA, is a member of the Los Angeles/Orange County Network Group. She is the mother of a son, Ethan, 11, who was diagnosed with Marfan syndrome at 7 months.

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