Caregiver

My daughter, who had spinal muscular atrophy, was mainstreamed in a regular classroom throughout her school years. We lived in a semi-affluent area. All her classmates were able-bodied. Her fellow...

Living within the dash, 1974-1991. My wife and I lived 'within the dash,' holding a ticking time bomb. During this time my daughter lived her life battling spinal muscular atrophy...

As a parent, we can remember that day when we heard the news, "Congratulations, you are going to have a baby." From that moment on, we immersed ourselves in planning...

Our son was diagnosed with a neuromuscular disease at the age of 5. At that time the name given for his condition wasn’t the same as his final diagnosis. We...

For our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems. The only noticeable activity was that he ran...

When we are given a health issue, we face a new journey. When it’s our own personal journey, we do our best to get the right answers and treatment. We...

Back in the 1970s, we found out that our daughter, Jessie, had spinal muscular atrophy [SMA]. A respected doctor told us that we should “put her away” because she was...

One night, many years ago, before dinnertime, I was sitting at my kitchen table by myself and thinking about Jessie, who had SMA, and her deteriorating condition. Unexpectedly, all of...

Years ago, an event caused us PTSD. Jessie, 16 years old, was in the hospital’s intensive care with severe respiratory difficulties for 2 months. However, the hospital wanted her to...

It’s now the start of a new college school year. As always, we all load up the car and take Mike back and get his room all set up for...

The time came to visit some college campuses. Mike really wanted to go to school in Florida, but the realization of his progressive disability caused him to look closer to...

I am the oldest of 5. I had one sister and 3 brothers. Growing up in my family I was always by my mom’s side. Being the oldest meant I was...

The story begins...My daughter, Jessica was born with spinal muscular atrophy [SMA]. She was a twin and my son did not have SMA. So, I was able to compare developmental milestones by...

Reliving our family stories brings back many memories of my son's journey with SMA. The emotions felt were painful, inspirational, scary, hurtful, and mostly sadness. Over the years people (mostly...

My late wife Zelda was pregnant in 1974! This was our first pregnancy! Zelda was under the care of her obstetrician.  She visited her doctor for all appointments. Everything was normal...

Spinal muscular atrophy (SMA) is a lifelong condition. SMA is most commonly diagnosed at birth or during early childhood. The symptoms of SMA depend on which type a person has...