Young man with ALS does ice bucket challenge, talks about life with the disease
Antonio Carbajal, his mother, and his grandmother have all been diagnosed with ALS, or amyotrophic lateral sclerosis. His grandmother died, his mom is dying, and Antonio is now living with the beginning phases of the degenerative neuromuscular syndrome. This video is his response to the currently viral "Ice Bucket Challenge" advocacy campaign raising money for ALS research. $41 million has been raised so far.
My father died of ALS when I was 10. Many other family members also died of ALS, the same "familial" strain Antonio and his mom have. Very few cases of ALS appear in family clusters, so that's where the term for the subset of the disease comes from.
Antonio is right. It's a terrible, terrible disease. There is currently no cure, and no treatment to arrest the disease's progress.
I was diagnosed with breast cancer in 2011 and consider myself lucky to not have received my dad's diagnosis.
I hope scientists find a cure, a cause, a treatment, some progress. We have not much more to offer people with Lou Gehrig's disease than when my daddy died.
Below, a video Anthony made when he was first diagnosed in January, 2014. There's an online campaign to help him pay for medical care. Yay, American health care system. He makes an appeal to Ellen DeGeneres in the video -- she accepted and he'll be appearing on the Ellen Show soon. Follow him on Twitter.