Counsyl Has Generously Donated Free Genetic Tests to Help Raise Awareness of SMA

At the Gwendolyn Strong Foundation, we want as many people as possible to know that 1 in 40 people unknowingly carry a severe mutation in the SMA gene. Getting tested before pregnancy is one of the best ways to make sure that your child does not fall victim to a possibly lethal genetic disease. And […]

A Royal Tea Party in Oz

This weekend Gwendolyn received a very special package of gifts (more on that later) — one of which is a Wizard of Oz tea set. Gwendolyn has been in heaven playing with it. We had a tea party yesterday with Laurie, Chris and Connor at the Santa Barbara Mission. And this morning Gwendolyn and I […]

Advocating for the Affordable Care Act: Gwendolyn’s Story (Video)

Over the last several years, we haven’t shied away from lending our voices to advocate on behalf of injustices we have faced. Most of these injustices, if not all, are sides to issues that we may have never become aware of had it not been for the life-altering reality of Gwendolyn’s Spinal Muscular Atrophy diagnosis. […]

Gwendolyn In The AeroSling Swing

It’s no secret, Gwendolyn LOVES to swing on the swings. We can’t even think about walking past the park near our house these days without taking her on the swings. And at her preschool, she’s on the swings every single day. She loves it. And we love it. Most of the time we hold Gwendolyn […]

Spinal Muscular Atrophy Power and Backup Power

In our experience, power and backup power for Gwendolyn’s various life-critical machines can be — well — a pain in the neck and, when we haven’t been prepared, extremely stressful and dangerous. We feel like we’ve encountered (or stumbled through) just about every power issue and emergency you can imagine over the past several years […]

Gwendolyn Tests Tobii and an Act of Kindness Leaves Us Speechless

We are speechless. Completely without words. Doors are opening for our little girl and because of an incredible act of kindness, they are opening even faster. Yesterday we had a trial for the Tobii Eye Gaze Communication Device. This “computer” is able to detect and follow Gwendolyn’s eyes and how she moves them. Using her […]

Good Things For Gwendolyn: Being Like Her Friends – Reading, Climbing and Sharing

It has been an exciting week at school this week. Gwendolyn “climbed” a tree and this is now her favorite thing to do. She saw all the other big girls in the tree and looked at me with an expression that said, Mom, we are doing this. It took some navigating, but seeing her so […]

Spinal Muscular Atrophy Machines and Supplies

In our personal experience, getting your arms around life-critical machines and supplies can be daunting in the process of dealing with a spinal muscular atrophy diagnosis. What will we need? Where will get all this stuff? What do others use? How are we going to figure all of this out? We remember these questions quite […]

Stander!

For the last several months at therapy, Gwendolyn has been working hard on practicing in her power chair and perfecting the setup and controls to give her the best opportunity to drive and drive and drive and drive and drive. And while she looooooves her power chair, the last couple of weeks Gwendolyn has been […]

Trilogy 100 Plug Adapter Issue and Cigarette Lighter Adapter Workaround

We had a pretty scary experience with Gwendolyn’s Trilogy 100 bipap while on vacation in San Diego. Gwendolyn has been using the Trilogy for about 9 months now and we absolutely love it. We’ve had no problems with the machine and we haven’t found anything negative about the machine — nothing at all — until […]