Connect Issues Fall 2020

By Kate Vogel McCray In 2019 our family moved and, for the first time ever, Fiona had to change specialists. It made us sad and caused anxiety. Within the first five minutes of her her first ophthalmology appointment in Texas I was told that both lenses in her eyes must be removed. I was a wreck! It was a lot to process and I looked in every direction for someone who could understand and answer my multitude of questions. But there was no one who really could be there to walk it with me. The surgeries came and went. We adjusted, we focused on the positives, and dwelled on the “cans” more than the “cannots.” A few months later, our world brightened when we were contacted by a mom, Ann, with a daughter who had the same diagnosis and who needed the same surgery as Fiona. Halle was even the same age as Fiona. Ann and I talked and she asked all the questions I had wanted answers to, but this time we were there with her and Halle. Ann and I wanted so badly for the girls to meet and have the support and comfort we found in one another. So cross-country Facetime it was, and it remained that way for quite a while. We desperately wanted to meet in person, but the Covid-19 pandemic had entered the equation. Fortunately, our children were already pros at long distance playdates. Halle’s surgeries were successful and tears of absolute worry and fear turned to tears of disbelief and joy. We shared the positive results and our girls shared an ever-growing and deeper bond. This summer, we finally met in person and the besties hugged for the first time. They chased each other, and giggles and happiness abounded. Moms embraced and were overjoyed by such happiness that had blessed each one of us through a truly terrifying moment, a moment where we wondered how it would be on the other side after the surgery. At the end of this rainbow there is something more precious than gold, something that no words can describe. And all the siblings are just as elated! Today we thank God for his mysterious ways and the gift he has given us in this family. The McCrays are a military family and Brian, Fiona’s dad, still serves on active duty in the Army. Fiona’s mom, Kate Vogel McCray, is retired from the Army. Fiona and her family will move again in 2022 to a new location and will re-establish care for Fiona. Kate enjoys raising her girls to be adventurous, hard-working, and supportive of one another. She is also a fluent German speaker. Fiona and her sisters are bilingual and attending German school in El Paso, Texas. They are hopeful they can continue learning in German at their next assignment. BESTIES

p Fiona and Halle got to meet for the first time late this summer after starting their Marfan friendship online during quarantine.

GET CONNECTED Sometimes you just need to talk to someone who understands life with Marfan, LDS, or VEDS. Whether you are affected or you’re caring for someone with a genetic aortic condition, there are times that you want to know what it’s really like to go through a certain procedure or live with a new medical diagnosis. Sometimes you just want to have someone you can talk to about every day life without having to explain your condition or its effects. This is where the Foundation's Mentor Program comes in. We are here for you. All ages and condition connections are welcome in the Mentor Program. Get more information at Marfan.org/Mentor.

12

Marfan.org