The first time something was ever thought to be wrong with me medically I was four years old. My mom took me to the doctor because she thought I had a lazy eye. Little did she know I was actually found to have “bilateral ectopia lentis“, meaning my lenses were dislocated. The left lens was dislocated up and out; the right down and out. At the time I was only looking through the edge of my lenses. My vision in the right eye was 20/80 and 20/160 in the left, 20/400 at distance. It was hard for people to imagine, that I had never been able to see much a day in my entire life. Yet somehow I had always managed to do things like color in the lines of coloring books.
Next thing we knew we were being sent eight hours away to the closest Children’s Hospital so they could remove them via two surgeries (bilateral pars plana lensectomy). It was a long time ago but from what I remember – and what I’ve been told, I responded to and recovered from both surgeries well. I don’t remember much pain involved in either of those surgeries. Without the lenses I was as good as blind, all I could see was a bunch of fuzz. I was given bifocal glasses for the next 6 years which magnified my eyes and made me really self concious. Even at four the first time I seen myself in them I thought “I’m never playing with anyone ever again. I’ll have to play by myself.”
This was not a normal thing for a child to be born with and so came the first of many times in our lives the word Marfan Syndromewould be brought about. At the time not much was known about the disorder. My parents had not the slightest clue what it even was. At the time though, it was thought the prognosis for a person with the disorder was poor and that those with it would not live a very long life. It would be weeks before I would be evaluated and my heart checked for signs of the syndrome and so my mom chose not to learn anything of the disorder. She couldn’t handle the thought, especially if it might not even come to pass. Although, my grandma took the liberty of researching what little info she could get her hands on and what she learned told her I would not live long. I’m told she spent an hour or so that day screaming at God in the field of their property. At the time I didn’t have many physical characteristics of Marfan Syndrome other than my height and the fact that my fingers were long and slender. The big ruling factor would be whether or not an Echocardiogram showed any dilation of my aortic root etc. This is a major manifestation of Marfan Syndrome and 90% of those with the disorder will eventually need open heart surgery to replace the dilating part of the aorta. Lucky for me and my family, my Echo came back clean. I was out of the woods, or so we thought. We were told then and there that I didn’t have Marfan Syndrome. What we weren’t told is that it cannot be ruled out at such a young age because a lot of the symptoms including the heart problems do not develop until later in life.
But for now it was all over and life could go back to normal for a while. I could see for the first time in my life and the entire trip back home I wouldn’t take my eyes off of the scenery outside. I still hated the way my glasses looked, but I loved how well I could see with them.