The Oddity of Oddsin a Year that Bent Us(August 2020) It’s a rainy Monday, the eve of the start of an important month and I find myself simultaneously at a loss of words while so many are swirling through my head. September is National Newborn Screening Awareness...

(Eila during our Parking Lot Picnic today!)   If I’m Honest I’ve always said if I had the time and temerity to write a blog it would be called “If I’m Honest.” Tonight, in the borrowed hours of Rare Disease Day 2021, that title seems like the perfect marriage...

    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. "Late."...

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....

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...

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 University for Pompe...

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...

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.

I've learned many things as a mom of 3 in 4 years' time: You can never have too much milk, too much toilet paper or too much faith. The latter has been tested for us this year. Deep breath. Gabriel is one year old now. What a year it's been. We're grateful...