Stop Surviving and Start LivingRecently I just got over my second respiratory infection in two months. Thankfully I hadn’t been sick or needed an antibiotic in...reactions2comments
Feeling Left Behind at TimesWith most of my posts, I try to offer some kind of helpful information from my past experiences. But sometimes I feel...reactions1comment
Accessible Summer Activities for Kids with SMASummertime is an interesting part of the year for people with disabilities, especially children. Warm weather seems great, but really it leads...reactionscomments
Removing Wisdom Teeth While Dealing with Respiratory IssuesAround the time I got my g-tube, I also realized that I was having problems with my jaw and teeth. After I...reactions1comment
Near Death Experience!Let me tell you the story of the time I almost died...twice. As a person with a spinal fusion and severe scoliosis...reactionscomments
"When I’m an Adult, I Will Walk"Do ducks swim in their own pee? Are babies even real? Or just pretend? When I’m an adult, I will walk. This...reactions4comments
My Process For A New WheelchairHello all! Today I wanted to share my wheelchair stories and my tips for getting a new one! Since my family can't...reactionscomments
On Being Told To Live Independently“You should learn to live independently. There’s a cerebral palsy patient that renovated her house and lives alone” “You should learn how...reactions1comment
Raising Awareness About Early Diagnosis and Immediate TreatmentAs someone living with spinal muscular atrophy (SMA), I know firsthand the challenges and triumphs that come with this condition. That's why...reactions1comment
Why Are You in a Wheelchair?This is the question that every person with SMA will be asked more times than anything else in their life. Parents who...reactionscomments
If I Knew Then What I Know NowWhen I was around 10, I was going through a lot of drama with my personal nurses. So now, I want to...reactions4comments
Summertime With SMAGood old summertime! How do you manage the summer with your SMA? Do you embrace the hot summer weather or prefer to...reactionscomments
The Number One Beach Accessory You Might Not Know AboutThe beach for me as someone with spinal muscular atrophy can be a difficult place. I often feel most disabled in this environment...reactionscomments
Debunking Myths About Living With a Rare DiseaseSince spinal muscular atrophy is part of a rare disease, I’m taking this opportunity to recap the journey. To be able to...reactionscomments
SMA Awareness Month 2022August is Spinal Muscular Atrophy (SMA) Awareness Month! Receiving a diagnosis for spinal muscular atrophy can be a long, frustrating process, leading...reactionscomments
A Sense of BelongingI can't remember if I've mentioned this before but for most of my life, I hid my SMA as much as possible...reactionscomments
Interabled Relationships are Just Like Any Other RelationshipLove knows no boundaries, and when it comes to interabled relationships, it is no different. Mike and I are in an interabled...reactionscomments
Curious About How Others Manage SMA? Share Your Experience in Our PollsNavigating life with Spinal Muscular Atrophy (SMA) encompasses a myriad of challenges and triumphs, particularly concerning treatment experiences, personal relationships, and quality...reactionscomments
Anxious When I Am AloneI was having a panic attack about being alone. As of writing this, I got a facial yesterday. My parents decided to...reactions7comments
Embracing The ChallengesI had the opportunity to participate in a video production for Rare Disease Day 2025, and it was a truly wonderful experience...reactions1comment
