Connect Issues Winter 2022

A CONFERENCE CONNECTION

Once upon a time, 10-year-old Laurel Giacone, of New Orleans, was diagnosed with Marfan syndrome. In St. Louis, another young girl, Amy McCawley (née Striker), was receiving a similar diagnosis. Little did they know that, when both families decided to attend a Marfan Foundation conference, it would be the beginning of a love story for the ages. At the 2008 annual conference in Boston, Laurel met Amy and her brother, Anthony, for the first time. “For sure, I thought he was very cute,” said Laurel. “But a lot of other girls had crushes on him too. I was closer to Amy at the time, so he was the brother of a friend. And Anthony was closer to my brother, Brad, because they both had a sibling with Marfan.” Laurel and Anthony continued to communicate “awkwardly,” she says, via Facebook over the next few years. They’d see each other at Foundation events and would catch up. Then the story takes an intermission. Anthony graduated from Maryville University in St. Louis and, as luck would have it, Laurel had decided to go to college in St. Louis too. She graduated from St. Louis University and remained in the area to work. “I definitely felt out of place at times during my life, not knowing my identity when I was first diagnosed with Marfan,” said Laurel. “I had to change my lifestyle, had surgeries, and really felt untethered. Going to the annual conference and meeting people who looked similar to me and understood was so magical. I had a lot more confidence at the conference than in real life.”

Following college, both Laurel and

Anthony ended up living in the same area of St.

Louis and ran into each other at what Laurel calls the “diviest of dive bars.” They struck up a conversation, and their relationship took on a new meaning. Since Anthony was already in the know about Marfan, he easily understood Laurel’s limitations and her needs. “When you start dating someone, it’s always huge to tell someone you have Marfan,” said Laurel. “You don’t want it to be the first thing you tell them, but you don’t want to seem like you are withholding information. I got really lucky because Anthony already knew.” Anthony was also Laurel’s rock two years ago when new genetic testing came back and revealed that she has Loeys-Dietz, not Marfan. She was happy to have the definitive diagnosis, but it was also terrifying. There are more things to consider, more to monitor. Anthony’s sister also found out through new genetic testing that she doesn’t have Marfan or any other connective tissue condition. Yet it seems that the original diagnoses for both girls was for a reason – for Laurel and Anthony to meet. “For a long time I had Marfan and went to the Foundation’s annual conference. Then, with the LDS diagnosis, I attended a Loeys-Dietz Syndrome Foundation conference,” said Laurel. “The following year, the LDSF became part of The Marfan Foundation. I felt that I was reflected in that convergence. These are two big pieces of me, and now it’s one bigger community.” The love connection took another turn on October 2, 2020, when Anthony proposed. Laurel wrote on her Instagram account, “2020’s finally looking up!” The wedding is set for March 2022 in Laurel’s hometown of New Orleans. SAVE THE DATE 2022 ANNUAL CONFERENCE July 8-10, 2022 Hosted by Hoag Hospital | Newport Beach, CA Registration is coming soon. Watch our website for details.

Photos by Robin Pagano Photography

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Winter 2022