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Quick update

I know a lot of you have reached out about what you can do and how to help, our team is slowly but surely getting through the numerous emails and messages that have came through. As we do this, please share Jason’s message to everyone – send emails, post on Facebook, tweet on Twitter, and … Continue reading →

Profits Before Patients

Today was one of the most difficult days of my life.  I had to sit in front of a CEO and the VP of Research and Development of Shire Pharmaceuticals to hear my son’s fate.  I am in such awe of what occurred,  I am struggling to even write, so here is a quick summary … Continue reading →

New Year, Same Request

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 … Continue reading →

Merry Christmas.

The Isaac Foundation created a beautiful video for us to share. Enjoy! Miracle Video And if you haven’t already, please sign the save Jack petition and then pass along. Thanks. Sign Petition ~BELIEVE IN MIRACLES~ Blessing to all, The Fowlers

Confronting Sorrow

Shire Pharmaceuticals has made the decision that Jack will not be granted compassionate usage of their drug. Also, they won’t consider Jack to be eligible for Phase III of the trial. A group of people met and determined my son’s fate. They opted death over life. “Please recognize that we do not make these decisions … Continue reading →

Gratitude List

My Top 10 special needs gratitude list. (No particular order) 1. Doctors who check their emails on a regular basis 2. Friends and family near and far who show up on your doorstep in times of need or stay up late replying to emails or PMs 3. Typical kids who stop to say hello to … Continue reading →

The Ups and The Downs and The Depths of MPS

It’s been an incredibly challenging month for my mind and my heart. A couple of weeks ago Jack went under general anesthesia for a few procedures- ear tubes placement, ABR (hearing test), MRI of the brain and spinal MRI. It marked my 6 year old sons 12th surgery. And by no means does it make … Continue reading →