Posted at 10:33 AM

1998, happier times. John III, middle, had the Marfan syndrome, as does his mother and sister (not shown). John III lost his life to an aortic aneurysm in 2002 at age 19
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One of the most difficult aspects of having Marfan Syndrome is the astronomical medical costs that are incurred while getting tested, and treated for the disease. As an example, my wife just had her first ever MRI's to make sure she had not developed an aortic aneurysm. My son never had an MRI and as a result he died at age 19 from an undiagnosed (by the $1,200.00 echocardiogram he had a few months prior to his death) aortic aneurysm. Just today I received an explanation of benefits from my health insurance company. Cost of the two tests $5,300.00, plan allowance-zero, I owe the provider $5,300.00. Two months ago my daughter underwent an outpatient cardiac ablation procedure, her hospital bill for the 12 hour stay was $36,000.00.

I have a box full of literally hundreds of insurance forms reflecting other health care costs we have encountered as a direct result of Marfan Syndrome over the past few years. The bills would be impossible to pay for 99.9% of the population without the assistance of health insurance, which is becoming more expensive and harder to obtain every year. Luckily we have not had to do without any needed health care, but I know of Marfan families who are unable to afford the medical care they, and their children, need to live relatively normal lives. It's hard to imagine how difficult it must be to know help is available for your child, but be unable to pay for it.
Thanks, John!