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.
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.
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.
