The past months have been filled with fighting and hoping and fighting to be let down. To then stand up again to fight more, hope more, and be crushed again. Shire Pharmaceuticals continues to deny treatment for Jack. Over the past month a gentleman who heard of our struggle, and who is well-versed in the rare disease world contacted Shire. He offered his knowledge and support to help Shire create a stronger trial that would include non-qualifying patients. Hoping to help save all kids, include all kids, be fair and support the fight to save your patients who are dying. After a month of waiting, and no contact with this man, we learned yesterday that he feels like he cannot do anything more. Shire continues to be uncooperative and so not patient focused.
How does one make peace with all this? How does one be okay with letting your child die in front of you when one watches other children with the same disease be given the opportunity to live? Making peace with all of this means giving up control. And giving up control means more sadness, pain, and hurt. So much of my past 6 years have been out numbered by sadness and madness that I can’t bear to think of adding more of these days. So I write to you sharing a glimpse, letting you all know I continue to watch my little boy lose interest in life, all the things that made his day light and full-filled, now being replaced by a very nasty disease. Its unbearable. I am so fearful of what is ahead. I constantly have dark thoughts floating through my head, no matter how many times I try to ignore or dismiss through breathing or meditation they quickly resurface and get louder. I feel needy and unsure of how to cope with it all, feeling isolated and alone. I hold a stone of hope that one day soon I will smile again, and not through the sadness and fear but a real genuine smile filled with happiness and lightness (with sparkles). So I am doing what I can, I muster up more energy to continue to fight, at the sacrifice of taking away energy to give Jack, Juliet, Jason, friends/family, but I can’t give up and I wont give up! We need you all to support us so we can continue this battle. We need each and everyone to help meet us on the battleground to HELP SAVE JACK!
Please excuse my grammer or grammar, my thoughts do not follow the rules.
A HUGE hug and thanks to Josh Gorman who is taking on an Ironman in Boulder, Colorado. He is enduring pain and finding strength through Jack and the loss of his father. All donations will be directed to The Isaac Foundation, MPSII Research. Please donate if you can, or please share with all you know, or cheer him on.
GO JOSH! http://www.crowdrise.com/BoulderIronmanforJackFowler/fundraiser/joshuagorman