Daniel's Monster

Sometimes it's easy to feel like Schuyler is the only kid in the world with her particular monster. Statistically, that's almost true, really. It's rare, so rare that without the internet, the chances are excellent that we would never hear about another kid in the world with Bilateral Perisylvian Polymicrogyria.

We would have never read about Daniel John-Maxwell Spranger.

Daniel suffers from Schuyler's monster, but his monster seems bigger, and meaner. At the age of 17 months, Daniel can't walk or talk, his hands don't work properly and he can't eat unassisted. I like to think that Daniel is young enough that it's impossible to say "never" about any of those things; when Schuyler was his age, we were just figuring out that something was wrong. In Daniel's case, however, his parents found out earlier because his symptoms are more severe than Schuyler's.

Daniel also suffers from Infantile Spasms, or West Syndrome. It's a severe form of epilepsy that can result in literally hundreds of seizures every day and can cause chronic epilepsy, mental retardation and a variety of other developmental issues. Daniel's brain is about 80% affected by his monster. Think about that for a moment. Think about how hard that little guy has to work to do what he does. THAT'S a fighter.

I bring all this up because Daniel's family is fighting their monster, and if Schuyler's monster is a T-Rex, Daniel's monster is Godzilla. One reason I wrote my book was to help others in a similar situation, and so I'd be remiss if I didn't do so right here as well.

Daniel's family could use some help, just like we needed help and just like you helped us. On their site, you'll find a page called Donations for Daniel. They are raising money for medical expenses, therapy, medical equipment (including wheelchairs and walkers), meds, hospital bills, and even an AAC speech device, this time from a company called DynaVox that makes a line of devices similar to Schuyler's Big Box of Words.

Almost two years ago, you people changed a little girl's life and brought her hope, and that hope continues to bloom every day. Schuyler was a true internet success story. I hope you'll do what you can to make lightning strike twice on the same monster.

Thanks for indulging me.