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 area. All her classmates were able-bodied. Her fellow...Reactions0reactionsComments2 comments
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 daughter lived her life battling spinal muscular atrophy...Reactions0reactionsComments0 comments
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 that moment on, we immersed ourselves in planning...Reactions0reactionsComments1 comments
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 wasn’t the same as his final diagnosis. We...Reactions0reactionsComments0 comments
Everyday LifeFor 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...Reactions0reactionsComments0 comments
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 to get the right answers and treatment. We...Reactions0reactionsComments1 comments
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 we should “put her away” because she was...Reactions0reactionsComments0 comments
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 SMA, and her deteriorating condition. Unexpectedly, all of...Reactions0reactionsComments1 comments
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 2 months. However, the hospital wanted her to...Reactions0reactionsComments0 comments
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 and get his room all set up for...Reactions0reactionsComments0 comments
The College YearsThe 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...Reactions0reactionsComments0 comments
Becoming My Boyfriend’s Full Time Caretaker 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...Reactions0reactionsComments0 comments
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, I was able to compare developmental milestones by...Reactions0reactionsComments0 comments
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, and mostly sadness. Over the years people (mostly...Reactions0reactionsComments3 comments
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 her doctor for all appointments. Everything was normal...Reactions0reactionsComments1 comments
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 SMA depend on which type a person has...Reactions0reactionsComments1 comments
