Connective Issues Fall 2024

QUEST FOR ANSWERS Leads to Diagnosis and Expert Care

Ty and Kelley Brack’s quest for answers has been a long road. For over two years, the couple navigated the complexities of the healthcare system in search of a diagnosis for their three-year-old son, Kylo. Kylo’s challenges ranged from milestone delays to a variety of health issues, including allergies and orthopedic problems. “We had to fight and claw our way through the healthcare system in order to get answers,” said Ty. “Getting a diagnosis for him was quite the journey.” Their search for answers began when Kylo was just nine months old. Over a year later, when Kylo was two, he underwent genetic testing after a physical therapist suggested they see a geneticist. A diagnosis of Loeys Dietz Syndrome opened the door to having other family members tested;

tions on Kelley and her mother, un covering that Kelley needed aortic root surgery and identifying an an eurysm in her mother’s bowel that required surgical intervention. “It’s been a whirlwind,” said Kelley, who had her surgery in April. “I just had my 17th major surgery, and no one did a simple swab all those years. So many things I’ve done through out my life - running, scuba diving, bungee jumping, and even having a child - could have killed me.” “The OHSU team has been incred ible for all of us,” said Kelley. “Because of the NW GAAP Clinic, we can all be seen on the same day by all the team specialists. It’s all synchronized.” The multidisciplinary clinic allows the visits to be coordinated between adult and pediatric cardiology, medi cal genetics, and cardiac and vascular surgery.

“Kylo’s the little guy that saved my life, my mom’s life. If it weren’t for him, we would have never been diagnosed.” ~Kelley  The Brack Family at the Paci fi c Northwest Walk for Victory

Kelley, 41 and her mom, 70, were both later diagnosed. “Three generations of Loeys-Dietz and nobody up here had really seen that before within one family,” said Ty. “There were some services at the local hospital but eventually it became clear that Loeys-Dietz is so rare that

Connecting with Community Following their diagnosis, the Bracks discovered the Marfan Foundation and its division, the Loeys-Dietz Syndrome Foundation. Eager to connect with others facing similar challenges, they attended the NW GAAP Symposium in May hosted by the Foundation and OHSU and one month later, they participated in the Foundation’s Paci fi c Northwest Walk for Victory which was sponsored byOHSU. “We met another family from Oregon a ff ected by Loeys Dietz,” said Ty. “Hearing their experiences and realizing how closely they mirrored our own was both touching and powerful. It was also good to meet others who are in my situation, as a supporter and caretaker.” While Ty has been proactive in seeking support, Kelley has faced her own emotional struggles. “It’s been a tough road with a lot of mom guilt,” Kelley admitted. “The mental burden is something many people might not understand. Managing Kylo’s condition has been a full-time job since birth, but we fi nally feel like we’re in the right hands. We have appointments daily, but at least we’re getting the right care.” Through the process, Ty has learned to channel his frustration into action. “For me, I’ve learned it has been bene fi cial allowing myself to feel anger and not holding everything in,” he said. “It’s frustrating when you can’t get the care you need but that also drives you to take the actions necessary to fi nd the right places and people who will provide the needed help and support.”

many doctors don’t even know about it.” Finding a Knowledgeable Care Team

The Bracks were advised to seek care at Oregon Health and Science University (OHSU), known for its specialized team of doctors focused on connective tissue disorders. The family hoped that a pediatric cardiologist and other experts at OHSU could better address the complexities of Kylo’s rare condition. Dr. Kathryn Holmes, a pediatric cardiologist at OHSU who was treating Kylo, inquired about Kelley’s medical history. Although Kelley had been seeing a cardiologist elsewhere, she decided to switch to OHSU. There, the NW GAAP (Northwest Genetic Aortopathy and Arteriopathy Program) Clinic team performed comprehensive evalua

 Presenters from the OHSU team and the Foundation at the NW GAAP Symposium

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