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
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
Caring For Our Daughter Born With Spinal Muscular Atrophy: One's Family ApproachWe were going to have a baby! My wife Zelda, water had broken that night and off we went to the hospital...reactionscomments
Tough DaysSome mornings you wake up and you just know the day is going to be tough. You want to stay in bed...reactions1comment
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
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
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
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
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
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
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
