There's not a thing in her life that's not affected by this syndrome. It affects every part and every minute of every day of her life and our life, and there's really no getting around it, Detlefsen said.
As a parent, to know you're probably going to outlive your child is not something that you ever want to even come to terms with. And I realize how precious our time is with her, Detlefsen said.
She's not going to magically heal, and I'm realistic about that. But the hope is that we can find ways to keep her more comfortable and to enjoy her life as best as she can, given the struggles, he said.
It took two-and-a-half to three weeks to get in for an MRI - the longest two weeks of our lives, Detlefsen said.
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