Ain’t No Mountain High Enough…

Gus ‘graduated’ from 4th grade in June. It was a cute little ceremony and we couldn’t help but notice that his teacher’s voice broke a bit as she read his name. Just a few days earlier, I saw this year’s seniors graduate from Souhegan High School and step proudly into the tremendous potential of their… Read More »

What have I done that is really hard for me?

It was as simple as me thinking, “What have I done that is really hard for me?” It was very late one October night in 2014, I couldn’t sleep, and this idea kept running through my head, as I thought of how hard every day is for Gus. I sat at my computer, aimlessly searching… Read More »

Miracles

The team has safely come off the mountain; they’ve done something profound – and that profound thing is not that they successfully completed a challenging hike. The hike was always just the vehicle to achieve something much bigger. They wanted to face challenges that Duchenne patients face every day – they wanted to put themselves… Read More »

I had an interesting discussion with Gus today.

I had an interesting discussion with Gus today. “Hey Gus, Mom started climbing today…” “I know.” “You understand why she’s doing this, right?” “Yes, to get money to give to the scientists so they can make me better medicine.” “If you could get medicine to help you do anything, what would it be?” “Run…and climb… Read More »

4 days until I leave for Everest.

4 days until I leave for Everest. It’s almost midnight…I can’t sleep. All of my gear is strewn all over the living room floor and I am just staring at it. Part of me is wondering, “What in the world am I doing? Why did I think I could do this?” How can I leave… Read More »

Traveling

Happy almost end-of-summer everyone! We had a very fun and busy few months, which included lots of swimming, hiking (for mom, anyway) and travel. We spent three weeks traveling to Minnesota, stopping to visit family and friends along the way. While it was mostly awesome, there was definitely a shift in how we can accommodate… Read More »

Perspective as Gus’ mom

We have been very busy with the Hope for Gus sponsored production of Oliver Twist! It was incredibly fun and the kids were amazing. Both Isabel and Gus were in the production. . . but Gus was adamant that he would NOT go on stage until the very last moment, when he went out there and was… Read More »

I just did some math

Dear friends, Thank you to all who have donated. I am about a third of the way to my goal! Last week I saw an orthopedist and was told that I have bursitis in my knee and a possible meniscus tear (an MRI will determine). So I have been wearing a ridiculously uncomfortable brace, feeling… Read More »

The Challenge

I will never, ever forget the day my son, Gus was diagnosed with Duchenne muscular dystrophy.  Our world crashed around us and every hope and dream we had for our boy faded away. Duchenne is devastating and will slowly take away all of Gus’ muscle function, and eventually end his life, if we do not… Read More »