That really is the question. With a diagnosis so rare the painful part is that little research has been conducted. There are no associations. No groups. No fundraisers or walk-a-thons. Nothing. Just a diagnosis and a couple of mediocre research studies with limited scope.
So what does the future hold for Abby? Will she walk normal? Will she talk normal? Will she continue to fall down and lose her balance as she gets older?
No one seems to know at this point. So for now we'll keep searching.