Transitioning to Adult CareSomething that’s rarely talked about in the SMA community is the process of transition from pediatric to adult care. It’s hard enough...reactionscomments
Having Adult BracesPreviously I wrote about getting my wisdom teeth removed and the pre and post-surgery to make sure everything was successful considering my...reactions1comment
Why I Love and Hate My G-Tube“Steve Stoma is the worst roommate.” Yes, I named my g-tube and that’s what I tell all doctors and people who have...reactionscomments
What to Bring to the HospitalPreviously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so...reactionscomments
Planning a Family With SMA: Things to ConsiderIf you have a child with spinal muscular atrophy (SMA) or are a carrier of the SMA gene, you face some serious...reactionscomments
Preparing for Pregnancy When You Have SMA - Questions for You, Your Partner, and Your DoctorDeciding to become pregnant as a female with SMA can be a very big decision. In my case, I knew I had...reactionscomments
What Does It Mean to Be a Silent Carrier for SMA?Spinal muscular atrophy (SMA) is a rare genetic disorder passed from parents to their children. SMA affects the spinal nerves by causing...reactionscomments
Useful Things For Someone With SMAWith spinal muscular atrophy, you know the easier something is, the better off you are. When you struggle to do the silliest...reactions3comments
Spinal Muscular Atrophy: Self-Care Tips for CaregiversSpinal muscular atrophy (SMA) is a lifelong condition. SMA is most commonly diagnosed at birth or during early childhood. The symptoms of...reactions1comment
Modifying Your Home for More IndependenceHaving an accessible home can help with some of the challenges of living with SMA. It can help with living more independently...reactionscomments
Now Closed: SpinalMuscularAtrophy.net GiveawayThe SpinalMuscularAtrophy.net Giveaway is now closed. Thank you for your interest! We're excited to announce a special giveaway for our community! We...reactionscomments
We Flow with the Changes in Our ChildYes, your role as a parent changes remarkably as your child grows from that little toddler into school age and then again...reactionscomments
The Joy of the MDA Summer CampI think we all can remember watching the MDA Telethon over the years. In addition to raising funds for research, a week...reactionscomments
Remembering the First DaysAs you move along in your life’s journey, the memory of life-altering events comes back in detail. We remember that wedding day...reactions1comment
The Journey BeginsI am the parent of a wonderful son who lives with SMA. What I’ve learned is that when you have a loved...reactionscomments
Everyday LifeFor our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems...reactionscomments
Introduction to MDA and My Son's Diagnosis JourneyAfter waiting months for the results of all those tests completed at St. Christopher’s Hospital, we went back to see the neurologist...reactions1comment
Learning From a Fall: Safety Tips for Wheelchair UsersThe other day, I fell out of my wheelchair. It’s not the first time this has happened, but it was definitely the...reactionscomments
Parking Lot Mishaps: The Wheelchair EditionWe've all witnessed that mom clutching her child's hand like it's a lifeline as they navigate a chaotic parking lot. This could...reactions2comments
Managing Fear in SMAOne of the topics I see covered a lot by parents of young people with SMA is the fear that they are experiencing...reactions3comments
