Rowan Wilbur turns 2 years old next week. Her parents said she’s in a race against time.
"At first, the parenting journey was fairly straightforward," mom Alyson said Wednesday. "I remember thinking, like, ‘wow we’re really good at this. Everything feels under control.’"But soon, things changed.Rowan could hold herself up and dance with dad Nick – until she couldn’t. She could push herself up with Alyson cheering her on – until that changed, too.
I mean it was a list of maybe 10 things, and they just say this is what will happen to her eyes, this is what will happen to her arms, this is what will happen to her legs, this is what will happen to her feeding, and I think we maybe made it to seven of the 10 items, and I started crying, and then our genetic counselor started crying, and that’s when you know it’s, it was just really a rough appointment.""It is ultra-rare," said Neurologist Dr.
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