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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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CHAD AND KRISTINA
Chad and Kristina
Parents of Talon, who had a peroxisomal disorder and died shortly before his 2nd birthday, and older brothers Benjamin and Nicholas
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I was worried about the empty crib.
For many people it’s a huge crisis of faith.
The division of labor is really important.
We never treated our son like he was sick. It was a way of life.
Pros and Cons of Social Media
Always give them a sense of what’s going on.
When there isn’t more treatment to be provided.
Our son’s strength put us in our place as to what our roles were.
Stopping curative medication.
We weren’t going back to the hospital.
The Medical Team: You want a sense of being heard.
I wasn’t afraid because I’m a planner
We weren’t going back to the hospital.
We knew we wanted him to be home.
A couple disagrees on open or closed casket.
The last hour of Talon's life, and letting go.
My fear is that I’m not spending enough time visiting him.
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Chad and Kristina
View / Download Interview transcript
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