Our family began August 23, 2006 with an amazing little boy, Jason Jeffrey, and then came our little prince Justin Jay, on February 25, 2009. These two little boys became our new love, a joy completely unimaginable. We hugged, kissed, played, read, giggled, tickled, and celebrated life like a normal family. Our perfect family, living out our dream, so we thought!
January 2011 our normal life became anything but. Our dream turned into the worst possible nightmare a parent could have. We received news that shattered our family as well as our life long dreams. Our perfect little boys were diagnosed with an extremely RARE and FATAL genetic disease known as mucopolysaccharidoses-2, also known as MPS II or Hunter‘s Syndrome.
How could this be?
How could both our sons have this fatal disease?
Questions and fears ran rapid through our household!
“Why us?” “ Why them?”
“How could this be happening to our little boys?”
“Why can’t life “let them be little?”
“Is this really happening?”
“How do we LIVE?”
“How many good years do we have left?”
AND OF COURSE
“How do we possibly even think of our life
WITHOUT these little guys?”
Our world has been turned upside down. We no longer have the freedom to allow our 4 and 6 year olds to just be little boys. Their lives have become doctor visit after doctor visit, MRI’s, blood tests, surgeries, weekly 4 hour IV treatments, hospital visits, physical-speech- and occupational therapies, visits to North Carolina Medical Center every 6 months, Laurie Children’s Hospital of Chicago 2 times a year, and countless checkups, while we constantly seek family support and help with our baby girl .
As parents you would think hearing the words “your boys hopefully will live to age 15” is the worst, but what leaves us unable to breathe, is having to sit back and wait for the days Justin and Jason’s brain and body parts deteriorate so significantly they will lose all communication, and the ability to walk. The most horrific thing is, the boys not being able to recognize their surroundings and ultimately not know who their mommy, daddy, and baby sister are anymore. That is what we consider just unbearable. This waiting game has left our family’s lives in complete turmoil.
Our hopes and dreams for our little boys’ future no longer exist. Jason, our super sensitive, lovey gushy, huggey mush, who loves baseball, fire trucks, and playing Dr. Jason, we thought… maybe a firefighter, possibly a baseball player, maybe a compassionate doctor……Justin our busy boy, never sitting still, always investigating how things work with a devilish smile…another baseball and football junkie who pushes cars all around the house and constantly builds with his blocks…..maybe an engineer, a scientist, who knows maybe even a race car driver! All those dreams for our little guys success has come to an end.
We no longer have time for dreams of what Jason and Justin will grow to be. Now, we place all our effort into keeping our little angels on earth, as protected, pain free, and comfortable as possible for the remainder of their shortened life expectancy. And dream there will be a cure before it is too late for our little loves.
We are just consumed and constantly worrying about how to make what is left of our children’s lives an incredible magical experience!
Why can’t life JUST LET THEM BE LITTLE?