My son dated a lovely young lady a few years ago who suffered from this disease.
She is a talented musician, and her condition made pursuing her dreams very
difficult. I don't know what has become of her, as they did not date very
long, but she was a sweet girl. This is where I first learned about the disease.
I hope by bringing this to the attention of a broader audience, that funds can
be raised to do research for an effective treatment and hopefully one day a cure
for this disease.
Very, very saddening.When I read of Haley's situation last year
I was hopeful some remedy would be found despite the "incurable"
designation at the time. It's painful to know she suffered so long after
fighting so hard. I wish it could have ended differently.My
condolences to her family and many friends.