Lindsay, Bear and Dani (aunt)
Parents of Quinlan, who died at the age of 2 of a rare genetic illness BRAT1, and his younger brother August.
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Learning our son had a rare genetic disease: It was a whirlwind.
There is no road map when the diagnosis is so rare.
A genetic diagnosis: I had to get over the guilt of feeling “is this my fault?”
Sharing the news of a genetic diagnosis and what it might mean for others in the family.
The diagnosis didn’t change anything. We were still just treating symptoms.
Support in the home: Having the support of close family kept us sane when our house became an ICU.
Nursing: Sacrificing some control, we had to expand our village.
Being the Aunt: It wasn’t easy but I wanted to be there.
IVF: Because the diagnosis is so rare we had to fight for insurance coverage.
His Name: We wanted something involving Quinlan, but we want August to be his own person too.
I'm learning more and more that there's not grief and, it doesn't have to be one over the other.
Legacy and Answers: Proud parents find meaning in donating their son’s tissue for research.
The day he died, we weren’t expecting it.
Staying with the body: Mom didn’t feel like she needed to be in there with him; Dad did.
I wanted to be strong for her but there were plenty of things that I screamed my head off in my car.
Being the Aunt: Staying with his body.
There’s no bereavement group for aunts: Double-duty grieving. I'm grieving for me but I'm also grieving what my sister has lost.
Letting God lead: When something like this happens, you question why me? Why us? I ask “please help guide me, show me what it is you need me to do.”