Our once normal life has become anything but……every day is heart breaking, dream shattering, emotionally draining, and the watching and waiting is unbearable….. A life no parent should ever have to experience.
But we have to LIVE …… Live for our little boys, and baby girl!
We vow to give them the most love & joy we possibly could squeeze into the short period of time we have left on earth with them…..to do everything possible to bring smiles to their beautifully innocent faces NOW, leaving Mommy, Daddy, Jordan Kenna and the rest of Jason & Justin’s loved ones with MAGICAL MEMORIES to hold on to as we someday face the challenge of surviving without them.
CHERISH EVERY MOMENT!!!!
Our Journey Continues!
Married, have two beautiful, energetic, little boys, a home filled with love and laughter, and are expecting a third child. You can’t help but think life is such a wonderful JOURNEY.
The phone rings one morning, it is our son Jason’s preschool teacher. The basis of the phone call…the teacher’s concern with Jason’s performance and ability compared to other children his age. Trying desperately to help your little boy you attend numerous appointments, being sent from one type of doctor to another. Then finally, one afternoon you reach the Doctor who knows what’s wrong. EXCEPT you are informed that your first born little angel has MPS, a rare genetic disease that has devastating effects on children, and a shortened life expectancy.
You listen to the doctor describe the disease, the effects, the outcomes, in absolute horror and disbelief. Sitting there waiting for the BUT, or to hear something positive, but that was not the case, it just got worse and worse. Listening to the symptoms, our hearts breaking into a million pieces, not our Jason. How could this be? And as we sat and listened to more horrific details our hearts just crumbled knowing Justin, our second little love, looks exactly like Jason and has the same symptoms, oh god! Not both of them! What do we do, the waiting was unbearable.
Imagine….You take your little frightened four year old in for multiple blood tests and body scans to determine what type of the this MPS disease he has, and how much damage it has done to his little body. After a series of more blood work, the results come back as positive for MPS II, a very degenerative form of the disease, affecting only boys, that has no known cure, and a life expectancy of 10-15 years of age. No cure! Life expectancy! Possibly 8 good years! Unimaginable & Unexplainable is the pain.
Imagine…. Two weeks from having your third child, of which you do not know the sex, your youngest son is tested (our hearts told us Justin had it too), and the results come back as positive for MPS II as well. Your youngest son turns 2 years old the very next day.
Trying to remain calm for your unborn child, for your sons, and your husband, attempting to go about life as normally as possible. You go to work, do the laundry, drive to preschool, clean the house, serve meals, make the children’s beds, essentially manage a life and take care of a house now filled with ruined hopes and dreams, filled with memories of innocence and youth, staring at walls covered in pictures of happy moments. Sitting down to think, how many more of these moments will our family have? You find yourself crying uncontrollably.
Jason Jeffrey, Justin Jay, and along the medical/emotional roller coaster is baby sister, Jordan Kenna, now have a life that consists of a series of routine doctor appointments and 6 month visits to the University of North Carolina Medical Center and Laurie Children’s Hospital in Chicago.