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.
![Learning our son had a rare genetic disease: It was a whirlwind.](https://i.ytimg.com/vi/CmBck0t1lnw/sddefault.jpg)
Learning our son had a rare genetic disease: It was a whirlwind.
A couple shares the whirlwind experience of finding out that their first son had a rare genetic condition. They were told by their doctors that he would likely never walk or talk, but they had to face they were not given a diagnosis.
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Learning our son had a rare genetic disease: It was a whirlwind.
![](https://i.ytimg.com/vi/X6UnYNFUK4c/hqdefault.jpg)
There is no road map when the diagnosis is so rare.
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A genetic diagnosis: I had to get over the guilt of feeling “is this my fault?”
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Sharing the news of a genetic diagnosis and what it might mean for others in the family.
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The diagnosis didn’t change anything. We were still just treating symptoms.
![](https://i.ytimg.com/vi/k91flDl8J0E/hqdefault.jpg)
Support in the home: Having the support of close family kept us sane when our house became an ICU.
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Nursing: Sacrificing some control, we had to expand our village.
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Being the Aunt: It wasn’t easy but I wanted to be there.
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IVF: Because the diagnosis is so rare we had to fight for insurance coverage.
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His Name: We wanted something involving Quinlan, but we want August to be his own person too.
![](https://i.ytimg.com/vi/YXqCNqnEFOw/hqdefault.jpg)
I'm learning more and more that there's not grief and, it doesn't have to be one over the other.
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Legacy and Answers: Proud parents find meaning in donating their son’s tissue for research.
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The day he died, we weren’t expecting it.
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Staying with the body: Mom didn’t feel like she needed to be in there with him; Dad did.
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I wanted to be strong for her but there were plenty of things that I screamed my head off in my car.
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Being the Aunt: Staying with his body.
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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.
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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.”
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