Website Search
ID 16921

An Adult's Reflection on the Progression of SMA as a Child

Steve reflects on the progression of his SMA when he was a child.
I could not raise my arms above my head. I would scoot on the ground in my early years instead of crawl and I would scoot along the ground. I could not turn from side to side. They would have to call my mother during the night and she would walk up 12 steps three or four times a night to turn me several times. There was an intercom in my room. I knew that I had to depend on my mother and father to get me up in the mornings, to put me to bed at night. When I needed to go to the bathroom, I needed to wait for someone to take me to the bathroom. I was able to feed myself at that point but it was increasingly, increasingly difficult. In fact, I can’t ever remember pushing my wheelchair manually for any length of time. By the time I was eight years old, I was placed in my first motorized wheelchair.
Spinal muscular atrophy, SMA, RNA, mRNA, splicing, gene, genetic, DNA, antisense, motor neuron, splice, neurodegenerative, complication, respiratory, skeletal, scoliosis, pneumonia, nutrition, pneumonia, surgery, curvature, brace, wheelchair, stamina
Creative Commons License This work by Cold Spring Harbor Laboratory is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Related content:

16918. SMA Disease Progression
Dr. De Vivo describes the disease progression for different SMA types.
16942. An Overview of Current Therapies for SMA
Dr. De Vivo describes the current treatments and therapies for SMA.
16920. A Personal Story of the Progression of SMA in a Child
Debbie and Ron talk about the experiences of their son with Type II SMA.
16919. A Personal Story of the Progression of SMA in a Toddler
Esther and Frank describe their daughter’s progression since diagnosis.
16916. A Personal Story of the Diagnosis of SMA – Adult
Steve remembers his early experiences with SMA.
16924. A Personal Story of Adult Life with SMA
Steve talks about life with mild SMA, from high school, to college, to a law career.
16950. 2D Animation of Antisense Oligonucleotide Therapy for SMA
An animation shows how antisense oligonucleotide therapy for SMA utilizes RNA splicing.
16941. 2D Animation of Alternative RNA Splicing
An animation shows alternate splicing of the SMN2 gene.
16923. A Personal Story of Daily Life for a Child with SMA
Parents describe Dylan's daily routine.
16931. 2D Animation of Genes and Inheritance
An animation introduces DNA and the pattern of inheritance for SMA.
Cold Spring Harbor Laboratory
CSHL HomeAbout CSHLResearchEducationPublic EventsNewsstandPartner With UsGiving