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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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KATE
Kate
Mother of Brooke and older son Jake. Brooke had infantile Tay-Sachs and at the time of this interview was age 3. She has since passed away.
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Child illness impacts a marriage in different ways.
You can change your mind re treatment and care plan.
Telling Jake about his sister’s illness.
It becomes about a good fit.
Oh my gosh, is she going to heaven?
Parents worry they’re going to have regrets, but if it’s the right decision …
Hospice streamlines everything.
People need to do what feels right to them.
I have asked every possible question.
It’s important to think about your other children.
It’s hard to imagine your life without your child.
Everyone has their stuff.
Parents ask, Did my child leave a legacy?
It’s OK to think about the future.
She’s made me proud.
There will be a sense of relief.
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