Last week marked a year of living in Illinois. And a year since we started attacking Jacks antibodies. Boy has it been a long, hard year but filled with so many blessed moments. My life patterns around Jacks care has consistently presented extreme hardships followed by rewards. My rewards have came in a variety of different sizes and I continue to self grow around having the ability to be just as excited by the small rewards which are Jacks belly laughs, a word that I haven’t heard for a year, a hand holding session, snuggles, or the bigger stuff- positive lab results, looser joints, better range of motion, news on drug development… Today we celebrate what I consider a big reward. As we mark 11 months of experimental therapy for Jacks body to accept enzyme replacement therapy we have lab results that say “we did it!” We received Jacks last 3 months of GAG testing and the steadily went down and this months result was big jump down. Now nothing is “normal” or “negative” but I am learning that due to Jacks full deletion of gene or his bodies inability to produce any enzyme means that there is no “normal” or “negative”. So right now our reward is he is getting some enzyme in his body. This will help him physically as we wait for better options that lie ahead. We know we need to get enzyme into his brain to keep his cognitive skills and prolong his life. I know that there are a couple of options on the horizon, one being an oral drug and another being gene therapy. As these options await we need to make sure the FDA has the ability to accelerate rare drug approval so the very lengthy drug trials can move faster. And also keep down the cost. I need your help in this matter, Jack needs your help TODAY! Please click on the link below and follow the steps to contact your local representative that can influence the Accelerated Approval for Rare Diseases. Today is last day to do this, sorry for the short notice we have been moving into our new home. Did I mention we moved? We moved closer to Jason’s office, we now live in the north Chicago suburbs, it’s beautiful (past the stack of boxes).

Accelerated Approval for Rare Diseases

Enjoy Jack’s smile, we were blessed with special visitors during our move transition…



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