Marfan Syndrome is a rare disease, happening in about 1 in 5,000 people. Of the about 7,000 people in Delphos, Ohio, Angel Flight East is helping that one. Meet Matt H.
Matt was diagnosed with Marfan Syndrome, an inherited disorder that affects connective tissue, most commonly the heart, eyes, blood vessels and skeleton. While the severity of this condition will vary by where on the body it impacts, 1 in 10 patients will have a high risk of death because of the cardiac influence. Matt is 1 in 10.
With an early diagnosis, Matt was able to keep his primary care for most of his life at the Cleveland Clinic. Other than being a “local” Center of Excellence, the only other specialized care providers for this condition were specific to pediatric. Matt and his family found themselves driving at least 3 hours one way for these appointments.
As time went on, Matt’s condition caused aneurysms in his aorta and other parts of his body. Surgery after surgery, Cleveland Clinic now referred Matt to New York University Langone Medical Center. In a matter of minutes, Matt’s three-hour drive, turned into 10 hours. The health risk of a major airport (that was 2 hours away) was too much for the family to fathom, and they started to plan their road trip. Ten hours in a car one way is hard on a healthy body, but when adding in an illness and the fear of the unknown, it was best to turn it into a two-day trip.
A road trip always requires some planning, especially when there is a necessary overnight stop in between- and we aren’t even talking about the financially planning that is required as well. Luckily, Matt’s mom had an idea: Angel Flight.
After contacting two different volunteer pilot organizations for information, Angel Flight East was the first to respond. Matt’s care team in Cleveland completed a few forms, and the next thing he knew, that 10+ hour drive turned into about 3 hours in a small airplane. The plane was going to pick him up 15 minutes away from his small town.
The stress of who-knows-what germs, mixed with the worry of any other travel experience seemed to melt away. Matt and his wife got to his specialist in New York with the ability to exhale.
As Matt’s condition has progressed, his overall condition has unfortunately declined. He unfortunately passed on Wednesday October 11 in New York. Angel Flight East is now working with the family to find a resource for the family to have Matt's remains brought home to Ohio, while providing flights to bring his family home.
