You did it Jack! 11 years! This past year you have shown me so much courage, strength, patience and commitment. You stayed out of inpatient this past year. You didn’t go under general anesthesia this year. You enjoyed skipping an infusion here and there. You reminded us of the little things. The simplest of things- … Continue reading

Ragbrai 2018 & helping fund a cure

It’s that time of the year again- Ragbrai 2018!  And Team Jack is geared up for another ride across Iowa.  We have grown again, 14 riders this year!  And the route has many familiar stops.  In fact this year it ends in Jamie’s hometown area, the Quad Cities.    This years Ragbrai 2018 fundraising efforts … Continue reading

Mother’s Day

Ever since I could remember I wanted to grow up and be a mom. I was that little girl playing with stuffed animals and dolls playing out motherhood. On September 7th, 2007 I was blessed with a little boy name Jack. He came into the world as a fighter and earned his badge of courage … Continue reading

9 years

I remember it like it was yesterday. I remember driving silently to the hospital. I remember waiting in the waiting room. I remember the consultation room and the position of the chair I sat on. I remember the entourage of med staff who came into the room I remember the words, “Mucopolysaccharidosis 2…degenerative disease…no cure”. … Continue reading


10!   When we learned of your full deletion we were told that we would be lucky if you lived to be 10. There is nothing lucky about you Jack. Your a gift that keeps on giving.  Last week I stood in Party City staring at boys birthday supplies with heartbreak. I spent days online … Continue reading

Ragbrai 2017 

We are 6 days out for Ragbrai 2017!  Team Pirate Jack has grown this year, we have 10 brave riders taking on the Iowa weather, hills, and farm country living.  It will be a great time for all.  Jason won’t be able to ride this year due to work and I will only be able … Continue reading

Project Alive

Hello Family and Friends. 5 years ago in late June I vividly recall a conversation with Deb Purcell regarding the research around gene therapy that was presented at a conference, the promises of gene therapy.  Our hope.   Immediately I called Melissa Hogan and the three of us set up a conference call with Dr … Continue reading

Care about Rare

Today is Rare Disease Day. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives and their families.  There are around 7,000 rare diseases and less the 500 of these disease have a treatment option.  50% of rare diseases affect … Continue reading

It’s Cool to be Kind 

5 more days to grab your tshirts. Great holiday gifts for a fabulous cause!   Check out “what’s happening” on this websites main page, look under menu.  Be a part of being kind and cool!   xoxo  J

I celebrate…

Today I celebrate.  I will not look back into the yester years and I will not be fearful for tomorrow.  Today I celebrate you my special, sacred soul.  Gifted not to others but to me.  In this very moment you are 9 now. You hold hands so tenderly and inquisitive.  You move your eyes around … Continue reading