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
Parents Living With a Ticking Time BombLiving within the dash, 1974-1991. My wife and I lived 'within the dash,' holding a ticking time bomb. During this time my...reactionscomments
A Parent's JourneyAs a parent, we can remember that day when we heard the news, "Congratulations, you are going to have a baby." From...reactions1comment
The First Time Pushing My Son in a WheelchairOur son was diagnosed with a neuromuscular disease at the age of 5. At that time the name given for his condition...reactionscomments
Everyday LifeFor our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems...reactionscomments
Finding the Correct Treatment JourneyWhen we are given a health issue, we face a new journey. When it’s our own personal journey, we do our best...reactions1comment
Adaptive Equipment for Jessie: Providing Medical, Educational, and Social SupportBack in the 1970s, we found out that our daughter, Jessie, had spinal muscular atrophy [SMA]. A respected doctor told us that...reactionscomments
A Conversation Between Myself and HeavenOne night, many years ago, before dinnertime, I was sitting at my kitchen table by myself and thinking about Jessie, who had...reactions1comment
A Scary ICU ExperienceYears ago, an event caused us PTSD. Jessie, 16 years old, was in the hospital’s intensive care with severe respiratory difficulties for...reactionscomments
Mikes New Trial For The Family - A Cancer DiagnosisIt’s now the start of a new college school year. As always, we all load up the car and take Mike back...reactionscomments
The College YearsThe time came to visit some college campuses. Mike really wanted to go to school in Florida, but the realization of his...reactionscomments
Becoming My Boyfriend’s Full Time SMA Caretaker I am the oldest of 5. I had one sister and 3 brothers. Growing up in my family I was always by...reactionscomments
My Daughter Was Not Meeting Developmental MilestonesThe story begins...My daughter, Jessica was born with spinal muscular atrophy [SMA]. She was a twin and my son did not have SMA. So...reactionscomments
Hope is The WordReliving our family stories brings back many memories of my son's journey with SMA. The emotions felt were painful, inspirational, scary, hurtful...reactions3comments
Comparing Developmental Milestones of TwinsMy late wife Zelda was pregnant in 1974! This was our first pregnancy! Zelda was under the care of her obstetrician. She visited...reactions1comment
Spinal Muscular Atrophy: Self-Care Tips for CaregiversSpinal muscular atrophy (SMA) is a lifelong condition. SMA is most commonly diagnosed at birth or during early childhood. The symptoms of...reactions1comment
