Jessie's Bucket List--What is on Yours?Everyone has a bucket list. A bucket list is something you want to do or experience before you die. In 1989, Jessie had a bucket list also. When she was... By Marc Mitnick3 min readBookmark for later Reactions 0 reactions Comments0 comments
Making Sacrifices or Accommodating Each OtherRelationships are all about give and take. We wear so many different relationship hats in our life. Child and parent, sibling, friend, mate and co-worker to name a few. When... By Suzanne Cutler2 min readBookmark for later Reactions 0 reactions Comments0 comments
Unlearning Ingrained AbleismI'll be honest here- I didn't grow up around anyone with a disability. Growing up, classrooms in my school were segregated. I didn't know anyone who was disabled personally until... By Samantha Lackey1 min readBookmark for later Reactions 0 reactions Comments0 comments
Memories of the Labor Day TelethonI’m sure we all can remember that Labor Day meant watching the Jerry Lewis’s Muscular Dystrophy Telethon. It was always an emotional experience for me. My senior year of high... By Maryalice Noon2 min readBookmark for later Reactions 0 reactions Comments0 comments
Helping My Daughter Make Choices and Experience LifeI realized that we, as parents of a child with spinal muscular atrophy (SMA), were trying to do everything possible to meet her needs. There were many choices in life... By Marc Mitnick3 min readBookmark for later Reactions 0 reactions Comments0 comments
My Reactions To Finding Out That My Daughter Had Spinal Muscular AtrophyMy experience with anticipatory grief (AG) began when Jessie was about 3 months old. She was not meeting her developmental goals compared to her twin brother. Our pediatrician advised us... By Marc Mitnick3 min readBookmark for later Reactions 0 reactions Comments0 comments
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 ambassador for the treatment she receives, I work... By Erin Courteau3 min readBookmark for later Reactions 0 reactions Comments3 comments
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 can say with certainty that we all come... By Maryalice Noon2 min readBookmark for later Reactions 0 reactions Comments0 comments
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 as planned. So, my wife, my parents, and... By Marc Mitnick3 min readBookmark for later Reactions 0 reactions Comments0 comments
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 mother crammed into my car, and off we... By Marc Mitnick3 min readBookmark for later Reactions 0 reactions Comments0 comments
Preparing Emotionally with a Child with Spinal Muscular AtrophyIt is 1974, and my wife was pregnant. We were not expecting twins However, we were blessed with twins. One of the twins, my daughter, Jessie was born with Spinal... By Marc Mitnick3 min readBookmark for later Reactions 0 reactions Comments0 comments
Taking Care of Myself as Mike’s Full-Time CaregiverIn March 2020 I became Mike’s full-time caregiver. This was a big decision and one we discussed for a long time. It was the beginning of the pandemic and Mike’s... By Suzanne Cutler2 min readBookmark for later Reactions 0 reactions Comments0 comments
Tough DaysSome mornings you wake up and you just know the day is going to be tough. You want to stay in bed, in the warm comfort of your home, and... By Erin Courteau2 min readBookmark for later Reactions 0 reactions Comments1 comments
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... By Marc Mitnick3 min readBookmark for later Reactions 0 reactions Comments2 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... By Marc Mitnick4 min readBookmark for later Reactions 0 reactions Comments0 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... By Maryalice Noon2 min readBookmark for later Reactions 0 reactions Comments1 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... By Maryalice Noon2 min readBookmark for later Reactions 0 reactions Comments0 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... By Maryalice Noon2 min readBookmark for later Reactions 0 reactions Comments0 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... By Maryalice Noon2 min readBookmark for later Reactions 0 reactions Comments1 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... By Marc Mitnick2 min readBookmark for later Reactions 0 reactions Comments0 comments