Connective Issues Winter 2019

WALK FOR VICTORY

“IT’S NICE KNOWING I HAVE SOMEONE I CAN CALL WHO’S BEEN THROUGH IT” Walk for Victory provides connections that give hope for the future

Getting a diagnosis for a chronic condition comes with layers upon layers of information, emotions, and questions. How will day-to-day life need to change in light of the diagnosis? Will family and friends understand? What does this mean for the future? These are just some of the concerns Nikki and Brett Bobbe, of Stilwell, KS, had when they learned their son, Elliott, 3, has Marfan syndrome. The genetic counselor at Children’s Mercy Hospital in Kansas City gave them a packet of information, which included information from The Marfan Founda- tion. The couple quickly discovered that the Foundation’s Walk for Victory was coming to St. Louis, within driving distance. According to Nikki, getting involved in the Walk for Victory was

TEAM ELLIOTT CAME OUT STRONG TO THE ST. LOUIS WALK FOR VICTORY TO SUPPORT ELLIOTT BOBBE AND HIS FAMILY.

one of the best steps they took in learning to support Elliott. The Walk was fun and welcoming, and an easy way to get to know others who know what it’s like to have a young child who lives with Marfan. Elliott is the first in his family to have the condition so the Bobbes found it refreshing to meet other people, especially kids, who also have it. “Seeing older kids and adults with Marfan gave us a picture of what Elliott’s future might look like,” said Nikki. “That’s so helpful and reassuring.” It also helped them solidify their community of support. Not only did the Bobbes’ family and friends build an enormous network of support for Team Elliott, but Nikki and Brett also made connections with other families like theirs. It’s only been about a year since Elliott’s diagnosis, but for him, life continues as it was, just now with glasses. The Bobbes are still asking questions, learning, and figuring out how to provide the best life for Elliott. But thanks to the St. Louis Walk for Victory, they aren’t doing it alone. One of the families they met at the Walk has a son close to Elliott’s age. He had recently undergone the surgery that is likely in Elliott’s future. Nikki said, “We have great doctors who we trust, but it’s so nice knowing I have someone I can call who’s been through it.” Reaching out to others and getting connected has brought reassurance and friends who helped put hope into a year that was full of questions and uncertainty. Making connections cannot eliminate the anxiety and concerns that come with a new diagnosis. But building a network of support through an event like Walk for Victory makes it easier (and more fun) to figure it out. We hope you will join us at a Walk for Victory near you in 2019.

WALK FOR VICTORY 2019

South Florida

January 27

Houston

March 2 March 9 March 9 March 10 March 16

North Carolina Birmingham (AL)

Phoenix Atlanta

Cleveland March 31 Southern California April 13 Milwaukee May 19 Boston June 2 New York City June 15 Minnesota TBA Portland (OR) TBA San Francisco TBA Washington, DC TBA For more information and links to register, visit Marfan.org/Walk.

10 Marfan.org