Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
January 11, 2007
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.
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14 comments:
Done. Poor little guy, let's kick his monster's ass too.
Thank you Rob- From Melanie, Daniel's mom.
Hey Rob. Very nice post and very nice to be assisting others in obtaining extremely needed adaptive aids. I once got a DynaVox for a former consumer of mine. That thing rocks. I'm hoping that Daniel's mom has signed him up for services. I know sometimes its a long wait and can be oh so frustrating. I think I may email her just to ask her if she may need any pointers. All the help I can provide I will. I just cant donate due to the twins. Anyway nice post.
Shannon
Done. Stay tough, little Daniel! Best wishes for the New Year.
I chipped in as well - thanks for bringing Daniel's story to our attention.
What, I'm supposed to resist an adorable kid in a chicken suit? Donation happily made. Fight on, Daniel.
I told a couple other blogs / people via email . That little guy rocks when they play the foot loose song HAHAHA loved his walking video :)
Done, with a snoot cocked in the direction of the monster and a wish for strength for Daniel and his family. Thanks for the heads-up, Rob.
txwncRob, this is Daniels Aunt Aimee. Thank you for posting information about Daniel on your daughters page. Daniel truly is a special little man made more special by you and those you know. I thank God for you and people like you who extend themselves to help others. Much appreciated. Random acts of kindness!
It was absolutely my pleasure. I hope we helped.
You can't imagine how thankful we are for your kindness. The flow to our webpage has been truly outstanding. I never imagined!!! And yes, it has made the world of difference knowing that there are people out there that actually care. I was being to wonder with the people we've had to deal with lately! :) Many thanks.
Melanie, Daniel's mom
Believe me, we've learned that while yeah, there are some vile people out there (and they can be loud), the majority of people who come through this site are incredible and generous. I can't begin to tell you how much they've done for Schuyler, and I'm glad they've gotten the opportunity to know Daniel.
Rob- It has been well over a year since your post about Daniel, and I just wanted to let you know that Daniel is doing more than most told us he would do. He is definately a fighter! I just would like to let you know that Daniel has been able to get many pieces of equipment that have helped him to be very mobile. And, we also have ordered Daniel augmentative device after reviewing many and have decided that he will do best with the PRC -ECO14. Can't wait until we get it. I just wanted to let you know that YOU and your readers, have made an incredible difference in my sons life and I wanted you all to know it.
I come back to this post every couple of months because what you wrote about Daniel was so touching..come back to remember that there are people out there who really care! Even a Mr. Fancy Pants like you! ;)
I am so glad to hear that! You'll have to let me know what you think of the ECO.
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