An Accessible Cruise VacationI just went on a birthday cruise on the Disney Wish with my mama! I wanted to share about accessibility and what...reactions3comments
Fears of the BiPAPLiving with spinal muscular atrophy, you'll often find yourself consulting a pulmonologist from a young age. Over the years, there have been...reactions1comment
Mental Health Awareness MonthMay was designated National Mental Health Awareness Month in 1949 by the United States Congress due to the increased number of veterans...reactionscomments
The Promise of TreatmentOur family journey began when Mike was five years old. After a barrage of testing and doctor appointments, we were given the...reactionscomments
Keeping Positive During Life’s TransitionsOur lives will be constantly changing. This is true for everyone. Whether you are disabled or not. Life never stays stagnant so...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
The Mom In The WheelchairRecently, I had an experience I didn’t know I desperately needed. I went to volunteer in my daughter’s kindergarten classroom. I was...reactions1comment
Maintaining Relationships with Family and FriendsCaretaking for a loved one is a full-time gig. I purposely used the word gig instead of job. I really love what I...reactions1comment
A Family AffairI have been writing about my spinal muscular atrophy journey for a few years now. I often wonder who out there is...reactions2comments
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
Disability Does Not Make You Immune to HardshipRecently, I have had a huge life transition and not a positive one. I feel society often thinks that disabled individuals do...reactions1comment
Caring For A Loved OneBeing paid to take care of someone is a thought that never crossed my mind. Growing up in a large family and...reactionscomments
Where I Got Stuck, and Other StoriesWe asked our Patient Leaders if they have any stories (humorous or otherwise) that only someone else with SMA or a disability...reactionscomments
Boredom BustersI can't tell you how many times I've Googled "Things to do in the winter when bored," or "Boredom busters" just to...reactions5comments
Red OctoberAny sports fan in the Philadelphia area will understand the phrase Red October. For those of you who are not lucky enough...reactionscomments
Parenting From a WheelchairBeing a mother is an adventure in itself, but when you add two young children and a wheelchair to the mix, things...reactions1comment
Honest Look at a Parent’s HeartbreakThe emotions that each parent truly lives with from that first day our child is given a diagnosis of a neuromuscular disease...reactionscomments
How I Find Worth in CaretakingTaking care of someone can be hard and trying. Especially when it is a 24/7 gig. There are days I wish I...reactionscomments
Large Medical Team Helps a Child With SMAWhen our daughter, Jessie was born we were overjoyed. We were unaware of what was in store for my daughter and our...reactionscomments
My First Wheelchair Seating ClinicIn previous articles, I’ve written about perception. How we are perceived is a big part of ourselves. When I went off to...reactionscomments
