Kaitlyn was a vibrant, seemingly healthy 14-year-old girl who enjoyed musical theater and participating in her high school’s color guard and JROTC. After she passed suddenly last September, her parents made it their mission to keep her memory alive through advocacy.
“[Her passing] totally came out of nowhere,” said Kaitlyn’s mom, Stephanie.
Seeking answers, they agreed to an autopsy and, after six weeks, found Kaitlyn had passed from an aortic dissection.
“I didn’t know what that meant, so I called the coroner to find out more about it,” said Dad Carlos. “We were told it looked like a possible connective-tissue condition.”
After testing, it was confirmed in December that Kaitlyn had had undiagnosed Loeys-Dietz syndrome. The family has since been tested; Carlos discovered he has the condition, but Stephanie and daughter Kylie, 17, do not.
“Looking back, Kaitlyn did have many of the signs of Loeys-Dietz – environmental and food allergies, hypermobility, milia on her face, nearsightedness, and easy bruising,” said Stephanie. “She didn’t have anything specific that stood out health-wise, but as we went back and looked, we came across 19 different doctors she had seen for various issues over the years, a dermatologist, allergist, podiatrist. There were many opportunities for her to have been diagnosed if the health care providers were more informed.”
Educating Community and Healthcare Providers
Following Kaitlyn’s diagnosis, the Morales family started researching and quickly came across the Loeys-Dietz Syndrome Foundation. They learned all they could about the condition and made it their mission to spread awareness by wearing t-shirts and handing out bracelets, stickers, and informational booklets to friends, family, and anyone they met.
But the Morales family wanted to do more. To help educate healthcare professionals, they put together a tri-fold pamphlet. Along with the new pamphlet, Stephanie and Carlos wrote a letter tailored by specialty to each of their 19 doctors to help them identify signs of Loeys-Dietz syndrome. They have also placed the pamphlets in Kaitlyn’s school and other locations.
“Spreading awareness helps occupy our time and stay focused on something else other than our grief and loss,” stated Stephanie. “Knowledge is very important, and the key message is to know the signs and get in touch with knowledgeable medical professionals.”
Care for Carlos
After learning he had Loeys-Dietz, Carlos contacted the Loeys-Dietz Syndrome Foundation to find an expert in his area. Since then, he has been under the care of Dr. Alan Braverman at Washington University School of Medicine.
“We live in St. Louis, and I feel very fortunate that one of the top doctors for this condition is three blocks away from where I work,” said Carlos.
Carlos goes through yearly testing and is paying more attention to his heart, body, and overall health.
“Before, if I was feeling stressed or working too hard and I felt my heart really beating fast, I would just work through it,” he said. “Now, I’m taking breaks. It’s going to take a little longer to get the project done, but I don’t want to take any chances. I want to be around as long as possible.”
Finding Support
After being newly diagnosed, Carlos wanted to connect with others who have the same condition. He has attended the Loeys-Dietz Syndrome Foundation’s support group, LDS Connect.
Stephanie and Carlos both attend the The Marfan Foundation’s support group for those who have lost loved ones.
“We have been attending the Coping Grief and Loss support group for five months,” said Stephanie. “Many of the same people are on the calls, so we’ve established relationships with them. We can share what we’re all going through, help and relate to each other, and get advice.”
Keeping Kaitlyn’s Memory Alive
Stephanie and Carlos are committed to spreading awareness to prevent others from experiencing the loss of a loved one.
They attended the April St. Louis Heartworks Gala fundraiser and recently drove over 300 miles to participate in the Iowa Walk for Victory in Des Moines. They are already planning to have a “huge” team at the St. Louis Walk for Victory this fall.
“This is how we stay close to Kaitlyn and honor her – by raising as much awareness and money as we can,” said Carlos. “We want her passing to have meaning. Yes, it’s really hard, but it helps us make sense of it all. If what we are doing can help just one person, that would mean everything.”
Whether it’s through support groups, getting involved in awareness and advocacy, resources, medical questions, or other activities, we are here for you. Please visit our website, Marfan.org. For medical questions, contact Marfan.org/ask.
Susan Benvenuti is the VP, Integrated Marketing & Communications for The Marfan Foundation. She enjoys getting to know community members and sharing their unique stories. If you would like to share yours, we’d love to hear from you - get started by emailing sbenvenuti@marfan.org.