Oralea and Rod
Parents of William, who died at age 8 from GM-1, and siblings Kyla and John
CPN's In the Zoom Room: What Siblings Want
A recording of CPN’s In the Zoom Room on what siblings want, featuring four bereaved siblings reflecting on their experiences. Gain insights into the fears and worries that siblings carry, the things that helped them (and those that didn’t), and how loving a brother or sister with a serious illness shaped them.
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I was drowning in grief but trying to avoid it.
CPN's In the Zoom Room: What Siblings Want
A sister: What I want to share with other siblings.
Rare disease in children: Voices of the Siblings
Helping Siblings Cope, From the Parents
Dividing, Getting Out, Staying In, Accepting Help.
Kyla was in grief counseling right off the bat.
I had to teach the teachers about the situation at home.
Kyla always introduced her friends to William.
How it has been for little brother John (age 4)
He taught her compassion and empathy towards others.
I can’t comfort them as much as I want to.
Be gentle with yourself as you parent your other children
The toughest part was learning that I needed to take a break.
He gave us the lead on what decisions to make.
The Pediatrician and Shared Decision Making: It was a true collaboration.
I didn’t plan anything.
We didn’t let ourselves think about the After, before.
His final moment was so peaceful and it was perfect for him.
It was the first time I exhaled in seven years.
He never gave up, so we learned from him.
One chapter is finished and another is about to begin.
I can’t comfort them as much as I want to.
The biggest transition is people not coming into the house everyday.
I’m most proud …