Connective Issues Spring 2024

FAMILY’S TOY DRIVE Brings Awareness & Happiness to Patients

Trying to navigate medical care amid a diagnosis of a rare genetic aortic and vascular condition can be overwhelming, especially for new parents. Such is the case with Maria and Jason from North Dakota, who faced unexpected challenges when their son, Jameson, was diagnosed with neonatal Marfan syndrome four years ago. Despite the initial shock, they dove headfirst into learning about the condition and advocating for Jameson's care. “We went down this rabbit hole of learning about Marfan syndrome,” said Maria. “It was just a really dark and scary period.” After having a bad experience with a doctor who didn’t know much about the condition, the parents made it their mission to research so they could be knowledgeable before going to future doctor appointments. Carrying a six-inch thick binder, they became advocates for their son’s care. Jameson now sees an experienced expert medical care team. During Jameson’s many hospital stays, Maria and

Jason noticed how even small gifts brought by hospital staff could brighten his day. “It really changed the aspect of being in a hospital,” explained Maria. “It would help take away the scariness of the procedures and staff changes that needed to occur for his care. These little gestures brought him so much joy, not only for him but for the nurses and us.” Inspired by this, they decided to give back by organizing a toy drive for other hospitalized children with a secondary goal of spreading awareness of Marfan syndrome. With the support of Jason's company and local media, they collected over 700 gifts to distribute to hospitals and organizations serving children with medical needs, including Sanford Children's Campus in Bismarck, ND, Sanford Children's Southwest Clinic in Fargo, ND, and Mayo Clinic Children's Center in Rochester, MN. They also dropped off additional donations at the Ronald McDonald House in Rochester. Maria and Jason didn’t stop there; they became a source of online support for families worldwide, sharing their experiences and offering advice on navigating the challenges of raising a child with additional medical needs. “It’s important to reach out for help and join the support groups and The Marfan Foundation’s social media pages,” advises Jason. “Do your research and get second opinions…third opinions. You need multiple opinions and doctors who all work together.”

 Above: Jason, Maria, and Jameson dropped off gifts with staff from Sanford Hospital in Bismarck  Right: Jameson’s family visits a wheelchair accessible waterfall in Minnesota when they have doctor appointments nearby

Lerman Hospitality Program Brightens Hospital Stays Jameson’s family’s generosity and giving spirit is similar to that of a family of long-standing Foundation supporters: the Lermans. If you know a child or young adult with an upcoming stay in the hospital, the Foundation’s Sydney Lerman Hospitality Program will provide age-appropriate gifts to children and young adults to lift their spirits. Learn more and submit a request at Marfan.org/lerman-program . You can also donate to this volunteer-led initiative on the web page.

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Marfan.org