Living

I have spinal muscular atrophy (SMA) type 3. I’m unable to stand, walk, or transfer. I use a manual wheelchair and power wheelchair and require assistance from others to assist...

Traveling is a great way to relax, learn about other cultures, and bond with your family. People with spinal muscular atrophy (SMA) and their families can still travel like everyone...

That has been the question for our family for 39 years. I’m sure every parent asks themselves that often. My experience is that we all try our best to juggle...

If you’ve ever lost out on accessible/ADA tickets to your favorite band or musician, today is your lucky day because I am sharing my tricks for always locking down a...

Beginning in my early 30’s, SMA started to take away a lot of my strength. As a result, I began sitting more and more. I mostly used my scooter up...

Finding the right doctor. As a little 4-year-old girl, I used to pretend I was pregnant. I would stuff a pillow up my shirt, tell my mom to place her...

After years of searching, I finally found a home builder for a new development that was more than willing to accommodate my accessibility needs and redesign their floor plans. So...

When your child has a long-term illness like spinal muscular atrophy (SMA), it is normal for them to have questions. They may want to know what causes SMA and how...

Parenting isn’t a job for the faint of heart. I live in a world full of adults living with disabilities, and I have the great privilege of seeing the amazing...

This is part 3 of an ongoing story. If you haven’t been following along you might want to start with Part 1 and Part 2 before continuing on here. After...

I have mentioned in a previous article that I have worked full time. After graduating college, I had a hard time finding employment at first. I was still walking at...

All of us have a unique story to share with the world. And whether it’s by writing a book, starting a blog, sharing on social media, or starting a connection...

The beach for me as someone with spinal muscular atrophy can be a difficult place. I often feel most disabled in this environment. The sand makes travel by wheelchair almost impossible...

After getting my g-tube placed in 2017, food became more of a luxury than a necessity for nutrition. While my feeding tube was there to help me gain back the...

Different types of SMA come with different physical abilities. Some people have a mild form of the illness and can walk. Others rely on assistive devices like walkers and wheelchairs...

I know every person‘s story is different, but the common denominator is the desire to be loved in most people's lives. As a disabled adult, the majority of questions I...

With most of my posts, I try to offer some kind of helpful information from my past experiences. But sometimes I feel melancholy enough where I just want to share...

It broke my heart when one of my good friends' daughters was diagnosed with SMA. The diagnosis was tentative, as he was waiting for a genetic result. But I know...

We left off when I was joining the board of directors at my local YMCA. If you haven’t read part one of this story, check that out first before reading...

Growing up, it always seemed like there was never going to be a treatment for SMA aside from the normal physical therapy, respiratory medications, etc. But nothing was specific for...