Telling Loved Ones About Your Child's SMA DiagnosisAfter getting news that your child has a serious illness like spinal muscular atrophy (SMA), you will likely turn to family and...reactionscomments
Navigating School Accommodations for Children With SMAThe United States government has many laws that protect rights to education for children with disabilities. Spinal muscular atrophy (SMA) is considered...reactions1comment
Jessie’s First Grade Class Learns About DisabilitiesThe back story: My daughter Jessie, had spinal muscular atrophy [SMA]. She was the first handicapped child to be mainstreamed in our...reactions4comments
Why Is Self-Care Important and How Can We Practice It?Self-care is one of those things we all know we should take care of, but neglect during stressful times. When managing daily...reactionscomments
For Parents: Advice on Talking to Young Children About SMAIt can be challenging as a parent to tackle difficult conversations with children and young adults about spinal muscular atrophy or disabilities...reactionscomments
Adaptive Fashion and the Double Take Fashion ShowHello everyone! Today, since it's officially June as I write this, and the warm weather is here, (my favorite season!) I wanted...reactionscomments
Helping My Daughter Make Choices and Experience LifeI realized that we, as parents of a child with spinal muscular atrophy (SMA), were trying to do everything possible to meet...reactionscomments
My Reactions To Finding Out That My Daughter Had Spinal Muscular AtrophyMy experience with anticipatory grief (AG) began when Jessie was about 3 months old. She was not meeting her developmental goals compared...reactionscomments
Just Let Me Return ThisHome delivery of groceries and online shopping became a normal occurrence for many people during the COVID-19 pandemic. As someone with mobility...reactions1comment
Interviewing for a Job When You Have a DisabilityInterviewing for a job can be a daunting task for anyone regardless of how physically or mentally capable you are. But when...reactions1comment
Preparing Emotionally with a Child with Spinal Muscular AtrophyIt is 1974, and my wife was pregnant. We were not expecting twins However, we were blessed with twins. One of the...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
Frequently Asked Questions (FAQs) About Spinal Muscular AtrophyWhether you are living with spinal muscular atrophy (SMA) or a caregiver for someone with SMA, here is a guide to the...reactionscomments
Talking to Others About SMAWhat are your tips for talking to your family and friends about SMA? What are your tips for talking to your coworkers...reactions1comment
This is How True Crime Podcasts StartThis is how true crime podcasts start: As someone who travels with my power wheelchair and who cannot transfer easily for trips...reactionscomments
Managing Thoughtless CommentsIf you use a wheelchair or scooter like me, because of spinal muscular atrophy, I am sure you have heard all of...reactionscomments
SMA Awareness or Pride?Everyone in the SMA community knows that August is our month... well, everyone except for me. I’m ashamed to admit I did...reactions4comments
Medicare Denials and Wonderful NonprofitsI recently wrote about my first wheelchair seating clinic experience. Since I wrote that article I was denied by Medicare for the...reactions1comment
Define LoveDefine love. It would be a broader definition for everyone. As I moved into the adulthood phase I started to get involved...reactionscomments
Therapy and Mental Health with SMAWarning: This post discusses my experience with mental health including anxiety and depression. Reader discretion is advised. I wanted to discuss my...reactions2comments
