Just What I Said!

Just What I Said!

    Dr. Kishnani & Gabriel Meet!   From the moment I began to understand what Pompe Disease is and what form of it my son has, I’ve protested the term “Late Onset Pompe Disease.” While I’m no doctor, I know the effect words have on people....
Step By Step

Step By Step

This summer, Gabriel turned two years old! I’m certain he was somehow clued into the guidelines and expectations of what comes with that number as he almost immediately began saying “No!” and “Miey!” (mine) with the gusto, ownership and dedication of a Vaudevillian....
KMBC-TV’S Pompe Story: Both Sides Now

KMBC-TV’S Pompe Story: Both Sides Now

I try not to take it for granted that, as journalists, people put their most precious stories into our hands in the most vulnerable moments with trust that when our fingers part those stories will be told in the way they hope and intend. I was on the proverbial other...
We Did It!

We Did It!

I spy, with my little blue eyes…  an amazing community full of love, hope, concern and cheers.  Because of you – whether it was kind words, prayers, donations of time or money – we are able to send this check from Gabriel’s Gale to Duke...
Speaking Of Eating and Eating My Words

Speaking Of Eating and Eating My Words

Before having our third baby, I decided to be much looser about motherhood.  Not to worry so much. I may not have decided as much as actually given way to circumstances:  3 kids 4 and under and only two parents.  Somehow, maybe I knew the room for my heightened...
Severely Awesome

Severely Awesome

A year and some change have passed since we traveled to North Carolina to introduce Gabriel to the fine folks at Duke University, where they are doing such amazing things for people with Pompe. As I write this, I reflect on a letter I sent family members when we...