My Story of Coping with Constant PEG Tube PainNot long ago, to make a long story short, I had a bunch of GI issues. The GI team decided to give...reactions2comments
Managing EnergyI often struggle with low energy, year-round. I'd like to share some things that have helped me and hopefully will help you...reactions6comments
My Journey With EvrysdiHi friends! Today I wanted to write about my journey with Evrysdi. If you or a loved one are making the decision...reactionscomments
Cure SMA Conference TipsI went to the Cure SMA Conference for the first time when I was 10 with my mom, dad, and grandparents (my...reactions1comment
Becoming MeAlthough we are only a few months into the year, as I write this, I've learned so much. About a week ago...reactionscomments
Thriving With SMAIf you live with SMA, then you know the ‘waiting for the other shoe to drop’ mentality. I lived there for a...reactionscomments
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
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
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
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
Looking forward to WinterDecember is officially upon us! At the end of the year, I reflect upon it. Usually, my seasonal depression really affects me...reactionscomments
My Favorite Accessible GiftsI know that, overall, finding gifts can be tough, especially finding things for someone who is disabled and has specific needs, like...reactionscomments
When My Wheelchair Gets Damaged Beyond RepairUsually, a situation like this would leave me in a very dark place. A few weeks ago, we were in a car...reactionscomments
Financial Independence, The Food EditionLet’s talk about financial independence. As you know from my first article here, financial freedom and independence are so hard. With Supplemental...reactionscomments
"Most Likely Not To…" The Musical!On February 29th, 2024, The Times Center officially hosted the first-ever SMA musical in collaboration with SMA My Way and Genentech! I...reactionscomments
Nighttime Tips and TricksBased on my friend Allie’s article about her morning routine, I thought I'd offer my nighttime routine. Here are some nightly tips...reactionscomments
What Does Independence Look Like?My friends Sawsan and James were in the Easterseals Disability Film Challenge. The film is called Out of Reach. In it, James...reactionscomments
New Year - New Me?I never liked the phrase "new year, new me." It made me feel like everything I did last year was thrown away...reactionscomments
CourageSometimes I find my confidence and insecurity going hand in hand. I know this might sound strange, but it's true. I don't...reactionscomments
Becoming Okay With My AnxietyIn middle school, I gained anxiety and was in pure denial, especially when it came to getting help, I was in that...reactionscomments
