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. […]

Little Star and Gwendolyn in Santa Barbara News-Press

You all know that Little Star is Gwendolyn’s animal BFF. She loves him so much and he loves her. I’ve written about them here, here, and here. We are so lucky that Diane (Little Star’s Mommy) is such a dear friend. She always includes us and she always, always makes Gwendolyn feel special. We met […]

A Good Laugh

I need a good laugh. Don’t we all? Having a good laugh just seems to help me refocus… look at things in a new way… let off steam. A good laugh makes my heart smile and I think we could all use more of that. These videos of Gwendolyn always make me laugh and well, […]

A Dream Come True

Firstly, thank you all so much for the many birthday wishes. You really made me feel special and cared for — and your messages, cards, and Facebook posts meant a lot to me (although Bill said I was clogging up his fb feed :))!!! I have to say that this may have been the best […]

New Awesome SMA Resource: InsideSMA

The Gooden family has been hard at work creating a really incredible resource for SMA families — InsideSMA. I always love when families come up with something new and innovative to help others!!! The tips, tricks, and advice on here are really wonderful. Everything from how to prepare for and manage mucus plugs to strategies […]

Good Things For Gwendolyn: Weekly Gramma Visits

Not unlike the connection I have with my Mom, Gwendolyn and her Gramma have an extremely unique and special bond, too. We’ve written about it before, but Gramma happily drives 80 miles each way from Los Angeles to Santa Barbara every week to spend time with Gwendolyn and help us out around the house. She’s […]

Our Power Chair Superwoman

Today was an incredible day for us and for Gwendolyn. Her shiny new power chair has been in for about a month, but we’ve been tweaking and fine tuning the set-up weekly so it fits perfectly and provides her the best positioning to drive independently. There are still more tweaks to be made, but today […]

Gwendolyn’s Story on the Floor of Congress Yesterday

Over the years we’ve been pretty outspoken about our experience with health insurance and our health insurance provider, Health Net (see past posts here, here, here, here, and here), and our thoughts on the health care reform legislation that was passed in 2010 (see the article on our family in the New York Times and our post here). With the swearing in […]

Racing to End SMA!

A few days ago I told you about the upcoming New Bedford Half Marathon on March 20th. And since that post, a dozen new people have joined the team! So the number is now over 40! 4-0 all running on one day, in one race, to help end this brutal disease!!! Running for a cause […]

It Arrived!!! Let the Adventures Begin!

Yep…it’s an extra special, super duper, really big, awesome, stupendous surprise… just in time for Christmas! Gwendolyn’s POWER CHAIR ARRIVED! EEEEEEEEEEEE! Yipee! Yipee! We are pretty darn excited around here…but most importantly, Gwendolyn is OVER. THE. MOON!!! Yesterday all three of us went to Gwendolyn’s therapy appointment with fingers crossed that her chair would really […]