DYLAN'S SILENT DISORDER

This is the story and struggle that my brother, Dylan, has dealt with for the last nine years. While some of you may already know, Dylan was diagnosed with Sensory Processing Disorder in 2008. This is a neurological disorder that effects Dylan's eating severely. He eats on average 8-10 different foods excluding all meats, vegetables, and seafood. In other words, Dylan basically lives off of Rold's Gold pretzel sticks only, ice cream and salt bagels. Not only does the food cause anxiety for Dylan but the smells cause this same effect. So much so that Dylan cannot sit in his school cafeteria and eat his lunch, until recently Dylan had to sit in the office alone to eat his lunch(now he sits in the cafeteria with his peers but will not eat). Dylan will only have playdates and attend birthday parties if it is family, because he is embarrassed when meal time comes and he sits...not eating....and the other kids start to ask why??? Dylan does not eat at ANY restaurants (excepts IHOP). Dylans SPD is really starting to effect him, as he cries to my mom, asking her "Why can't I be like all the other kids, why can't I eat just like everyone else?' It is clear that this disorder affects Dylan more than what a doctor can see. Since his diagnosis Dylan has visited multiple doctors including two neurologists, an allergist, dermatologist, gastroenterologist, nutritionist, and of course a feeding team. At the age of four, Dylan had weekly treatment for a year and a half but progress was extremely slow and he eventually hit a plateau meaning weekly therapy would not continue to improve his eating. His therapist suggested partial hospitalization intensive feeding therapy. For the last two years my mom was been non stop researching different intensive programs for Dylan. There are several programs on the East Coast, but they all implement a behavioral approach to feeding. Dylan's eating and the smell of foods is strictly based on Sensory Processing therefore this treatment would not be beneficial. Fast forward to today, we have finally found a intensive feeding program at the STAR Center in Denver, Colorado, that uses the SOS feeding approach. Because Dylan has only been diagnosed with Sensory Processing, insurance will NOT cover ANY of the treatment. Treatment for Dylan is $14,000. plus airfare, hotel for month, and food. My family has decided this is the only way Dylan would be able to overcome his disorder. Treatment starts April 12th and ends May 9th(My mom and Dylan will live in Colorado for the month). This is why I have made this page. Considering my mom does not accept help easily, this is the only way I could try to help take the stress of expenses off of her and my family. While this is 100% about my brother, I also want give my mom the help that she would put out for anyone else. Sensory Processing is just as serious as any other neurological disorder and must be recognized. I pray that this is the final step to getting help for my brother but also the beginning of recognition about Sensory Processing Disorder. #ThisIsTheStart

http://spdstar.org/">http://spdstar.org/


http://www.spdfoundation.net/star.html
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Organizer

Rachell Cimino 
Organizer
Toms River, NJ
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