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What sounds like a pretty cool X-Men ability is
unfortunately a debilitating disease for 4-year-old Shane Terry. The boy was
born with the genetic condition fibrodysplasia ossificans progressiva, or FOP.
FOP causes ones muscles and connective tissue to ossify if damaged. In other
words, they turn to bone.
This means outdoor play, running or any other physical
activity common to young boys and girls are ripe with terrible consequences for
Shane. Shane’s mom, Kimberly Hayes, must keep him indoors most of the time; one
fall could cause a movement-inhibiting ossification. When a flare up does
occur, it looks like a massive tumor on the small boy. In time the protrusions
deflates, but the damage is done.
According to the International Fibrodysplasia Ossificans
Progressiva Association, FOP is one of the rarest, most disabling genetic
conditions, with more than 600 confirmed cases across the globe. At present,
the disease has no cure.
My wife and I went through a health scare with our own
daughter. During a routine 9-month checkup, the doc did some measurements on
Jillian’s body and then casually suggested that the girl might have Marfan’s
syndrome. A rare condition, Marfan’s is a heart defect that spells out a short
life for those afflicted with it.
As you can imagine, my wife and I were twisted into knots
for the next wait as we waited to see a geneticist and get a final judgment. Upon
visiting the genetic doctor, we were dismissed by her right away. “No way does
this kid have Marfan’s.” She barely had to look at our child. I wanted to punch
our pediatrician’s head off like a Rock ‘Em Sock ‘Em Robot for the cavalier
attitude he took in assigning a deadly disorder to our daughter.
That week we spent in limbo might be what day to day life is
like for those who parent a legitimately afflicted child. We have all had
health scares with our children, so we all have a sliver of an idea of what it’s
like to have a heartbreaking love for a kid you can’t bear to see suffer. I’m
not really going much further with this; it’s just one of those things that
remind you how lucky you are to have a healthy child.
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