Grandparents Help Child with SMA Live LifeZelda's water had broken that night and off we went to the hospital, as planned. So, my wife, my parents, and her...reactionscomments
Adjusting to Life’s TransitionsLife consists of transitions both large and small. One could argue that transitions are good and bad. I would argue that life...reactionscomments
What Is the Social Health Network?Like our other Health Union condition communities, the Social Health Network brings people together to drive unique and impactful conversations about health...reactionscomments
Working on Mental ToughnessI wrote an article a while back, “Staying Mentally Healthy.” In that article, I attributed a lot of my mental toughness to...reactionscomments
How Clothes Made the Difference to My DaughterMy daughter, who had spinal muscular atrophy, was mainstreamed in a regular classroom throughout her school years. We lived in a semi-affluent...reactions2comments
Being a Parent of a Child with SMAI have talked about this a few times already. I have also read other parents' points of view on this site. I...reactionscomments
Personal Care AssistantsMany people with spinal muscular atrophy hire a personal care assistant to provide a wide range of tasks, from personal care, meal...reactionscomments
Where Does This Leave Siblings?That has been the question for our family for 39 years. I’m sure every parent asks themselves that often. My experience is...reactions1comment
The Decision to Change our Lifestyle for our DaughterJessie and her brother were born twins. It is important to realize that she was diagnosed with spinal muscular atrophy (SMA) at...reactionscomments
Wedding Dresses and WheelchairsSince I was a little girl I dreamt of the day that I would “walk” down the aisle on my big day...reactions1comment
A Village of Healthcare ProfessionalsWe quickly needed a village of professionals. Our daughter, Jessie, was born with spinal muscular atrophy (SMA) back in 1974. We quickly...reactionscomments
Finding Financial Assistance for TreatmentMany illnesses, such as spinal muscular atrophy, come with steep price tags. Once you have a diagnosis, navigating treatment expenses can be...reactionscomments
My Good Days: A Resource for Financial HelpI’ve talked about the “disability tax” in previous articles. You’ll hear people who have a physical disability use this term. It basically...reactions1comment
That Hospital Stay and One Nurse in the ICUIn 1974, my wife and myself were frightened when the Pediatric Neurologist diagnosed my daughter, Jessie, with spinal muscular atrophy (SMA) when...reactions3comments
Finding HalloweenThe festive side of the year is around the corner, and that always gets me excited! A key part of living with...reactions2comments
SMA In America: Results from Our 2022 SurveyIn our first ever Spinal Muscular Atrophy In America Survey, we collected information from 54 adults living with SMA and 8 caregivers...reactionscomments
Breaking the SMA BarriersEveryone has to deal with barriers. When we think of spinal muscular atrophy we probably assume these barriers are physical. I want...reactions1comment
Voting With a Disability: What to KnowVoting is a fundamental American right, but it has special meaning for people with disabilities, like spinal muscular atrophy, or health conditions...reactions1comment
Making the Best of ItI recently watched a new movie based on a true story about a young man who unexpectedly became a quadriplegic due to...reactions1comment
This is Her SpaceAdvocacy is part of my daily life. I provide family support to newly diagnosed families, I share Emma’s story as a patient...reactions4comments
