Living

Usually, a situation like this would leave me in a very dark place. A few weeks ago, we were in a car accident, and I thank God every day that...

I know that, overall, finding gifts can be tough, especially finding things for someone who is disabled and has specific needs, like those that come with spinal muscular atrophy. Here...

Last year, I decided I wanted to begin the process of looking for a job. Up until this point, I’d never worked a steady job before in or outside of...

Let’s talk about financial independence. As you know from my first article here, financial freedom and independence are so hard. With Supplemental Security Income (SSI) limits, I can feel trapped...

Two years ago, I was hit with some bewildering symptoms. A loud roaring noise invaded my left ear during a visit to my sister in Maryland over the summer. I...

If you live with spinal muscular atrophy (SMA) of any type, then you know how difficult it can be to have medical procedures done. There’s a lot of logistics and...

I remember this day well. The start of an unbelievable journey. Who would have thought I needed to wear a BiPAP? It has never come to my mind. I wore...

During my school years, active participation in safety drills, including fire and tornado drills, was mandated. For the average able-bodied child, these drills seemed straightforward. When the alarm sounded, students...

I have anxiety about being surrounded by large groups or crowds of people. But when Taylor Swift announced her 1989 World Tour was coming to Maryland a few years ago...

Based on my friend Allie’s article about her morning routine, I thought I'd offer my nighttime routine. Here are some nightly tips and tricks that really help me. I would...

Buying a home is an exciting adventure. However, when you are dealing with a disability like spinal muscular atrophy, you know that you will need to make some renovations. If...

On December 23, 2016, I celebrated my birthday, marking a momentous occasion: the FDA had approved Spinraza as the inaugural treatment for spinal muscular atrophy (SMA). I recall lying in...

One of the most common questions I get asked regarding my frequent traveling is how I shower. Of course, this depends on our lodging situation, whether it be a hotel...

I am the youngest of my siblings at twenty nine years old. I have two step-brothers and one step-sister. Due to genetics, I am the only one in my family...

When I was in school, I had a personal aide who accompanied me every day and followed me through several grades. She knew all about me, my specific needs, and...

Hello all! Today I wanted to share my wheelchair stories and my tips for getting a new one! Since my family can't afford a van, (why are they so ridiculously...

As summer eventually becomes fall and winter, bringing with it an increased risk of illness, those of us living with spinal muscular atrophy (SMA) face unique challenges. While we often...

Around five years ago, I had a throbbing toothache. I had no idea what was wrong other than my face hurt and my tooth hurt. We had just moved to...

I feel like I've mentioned my advocacy here and there, and I'm sure we all know the reason behind why it's important; for us disabled people to have equal rights...

For families and people living with spinal muscular atrophy (SMA), health advocacy is a vital part of navigating the condition and improving lives. Advocating for SMA has a ripple effect...