When we thought about having children some 7 years ago, we envisioned, family vacations, leaving cookies for Santa, Easter Egg hunts, biking, swimming, chasing the ice cream truck, boardwalk rides, parks, school plays, sports, graduations, weddings, and possibly becoming grandparents.
Who would have thought?
We were so unprepared for the news thrust upon us. We still two years after diagnosis struggle daily trying to cope with such a life changing event… so heartbreaking, so unexplainable, sooooooooo unfair?
To all, Jason and Justin seemed to be no different than any other child of 4 and 6. They play typical childhood games, sing, cry, and scream from the top of their lungs, and run around the house in their underware or pull-ups, make messes, giggling uncontrollably, and have a hard time falling asleep without their favorite blankets. All things considered to be a normal household with little ones, so we thought.
January and February 2011 our normal happy lives CHANGED FOREVER!
At a consultation with Genetic Specialists, Dr. Helio Pedro, and Counselors at Hackensack University Medical Center, we were given news that would shatter any parent’s lifelong dreams.
We were told our two little loves have a RARE and FATAL genetic Disease and will be taken from us before age 15.
First, came the SILENCE, followed quickly by a ton of confusion. What did you say, wait what is going on? Five minutes ago we were a normal family.
Then the unstoppable TEARS SPILLED down our cheeks, How Could This Be? I can’t believe what I’m hearing, loose both Jason and Justin. Why? How?
Questions and fears ran through our heads like a runaway train!
“Why would this happen to our little boys?”
“How could both boys have this life threatening disease?”
What?! Life expectancy hopefully 10-15 years.
And ultimately the question in our mind and hearts every minute of every day:
“How do we prepare ourselves to say goodbye to our two little boys, whose life hasn’t even begun to start?”
Learning that our two boys have a fatal disease of where there are less than 350 known cases in the United States has turned a once colorful world dark and grey.
The most frustrating part in trying to understand and deal with the disease is that all cases are different, ending with the same results, but there is no known consistency of when MPS-2/Hunter Syndrome will begin to destroy our boys physically and mentally. There are little pieces of destruction that have started already and more happening every day, but when does the heartbreaking effects begin.
It’s an exhausting waiting game for both child and parent alike. As the days continue to progress, so do the possibilities of the disease taking total control of their little lives, and MPS 2/Hunter Syndrome has ultimately taken control of our family’s lives!