A New Year
This year began with the reflection of the past year. So many fond memories of life – special visits from family & friends, my children laughing in the car, a pirate party, a trip to Florida to see Barney, dance parties in the basement to top 40 music, new beautiful home, critters (turtles,frogs,deer) in our backyard, boat rides on the lake, sledding down a hill…just a few sweet memories that pop in my mind.
And then the hardships of the year; Jack having 4 surgeries over 8 months, watching Jack lose skills right before our eyes, more treatments and procedures that I can count, our sweet Juliet being emotionally effected by MPS life, and each day waking to so many unknowns. And the worst memory, a battle with a pharmaceutical company that is opting not to provide a drug that would stabilize Jacks brain, giving him the opportunity to live and grow.
Well the holidays are over, we are well into the new year now, so the fight to save Jack becomes stronger. We deserve an explanation to why Shire won’t allow Jack to live, we deserve the respect as a society for a pharmaceutical company to address all of our questions and concerns. It’s time for Shire to step up in this New Year by showing the world that they are committed to rare disease!