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Core Concepts
The Beginning
Advocating for Your Child
Understanding Interventions
Coping, Family and Relationships
End of Life and Bereavement
Explore
Not sure where to start?
Explore CPN Core Concepts
Learn More
Video Library
Audio Library
Guides
Pathways
Blog
Featured Family
Units
Diagnoses
Events
About
Not sure where to start?
Explore CPN Core Concepts
Learn More
Our Origin
Donors
Annual Report
Parent Champions
Speaking Engagements
Staff and Board
Mobile App
Contribute a Blog
Collaborations and Co-Authorship in Research
Medical Advisory Board
The Ilene Beal and Margaret S Lindsay Courageous Provider Awards (2024 Announcement)
Talk to CPN
En Español
Clinicians/Educators
NeuroJourney
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JANET AND BRIAN
Janet and Brian
Janet and Brian, parents of a young boy who died from SMA, share their experience.
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Two families, Two Paths
SMA ran in the family, and then it hit us in the face.
I relied mostly on the early intervention people to help focus on the living.
She’s very closed off about it.
I remember his breathing but I don’t remember other stuff.
People say things happen for a reason but I haven’t found the reason yet.
We both lost friends over this.
We did everything we could just to live life. Lots of photos!
We weren’t tempted to do any experimental trials.
I just couldn’t see our son with the tubes. It was just the way it was.
You need to make memories to have a whole life with your child.
I love looking at his things.
My grief has changed over the years but it still gets me at random times.
He should be 8. I should be at Little League games.
We didn’t get any counseling or do a support group after.
At Easter we go to the hospital with baskets and ducks.
Not once did we think we’d have any regrets.
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Janet and Brian
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An SMA Parent Reflects on the Interview, and so does CPN.
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