SMA families are exceptionally creative -- out of necessity and out of devotion. And Hayden Calafiore's grandmother, Shelly, is proving this once again. There is pretty much one stroller/wheelchair option for SMA Type 1 families -- the EASyS. The EA ...
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 ...
Three words:Camping with Hayden! Yep and that equals a VERY happy little girl...make that two very happy little girls...and four very happy parents watching them. Visualize: fishing, dancing, camp fire, sparklers, family, FUN! Chris and Jennifer set every ...
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, Gwendol ...
SMA is a muscular dystrophy disease. Like cancer and its many awful versions, there are many forms of muscular dystrophy that fall under this one umbrella. The Muscular Dystrophy Association was the first organization to really put a face to these many di ...
On Thursday night we learned that our dear sweet special friend Jonas Coleman had passed away -- a gorgeous blue-eyed almost 3-year-old darling little boy. Tomorrow is his funeral. And we are heartbroken.And while I try to sit with the thoughts of him no ...
Ahh what a weekend! It was awesome!!! GSF's Golf For A Cure was held on Friday (more on that soon) and we were so, so excited that several of our SMA friends came into town to support it and spend time with us. The Calafiore's, Chris and Jennife ...
The power chair is being ordered!!! Hazzah! After almost a year of preparation, trial and error, Jerry-rigging, tweaking, and lots of practice, practice, and more practice, we have found a system that works for Gwendolyn and she is ready to hit the road. ...
Gwendolyn is a champ! She is transitioning to the Trilogy with ease and, thanks to the help of so many people, the last few days have been positive ones. The reality that her settings are now so high that she is even more vulnerable weighs heavily on us, ...
