http://www.yardbarker.com/content/player/2697 Recent articles about Roy Manning en-us Dean, Here is the story I wrote about 13 year-old Josh Rusnock of Freeland, Pennsylvania for an edition of the Standard Speaker newspaper. I'm so sorry about that missed attachment. Here it is. And everything you said is fine. I will be more than happy to pass the news on to Josh's mom. Please let me know if you need anything further and I would be more than happy to assist you. Josh is such a good kid and it's become part of my mission as well to find every avenue of help for him and his family. Like I said, please let me know if there's anything more you need. Thanks So Much And Take Care- Imagine having a disease that only a few people in the world know about, and even fewer people have. By BOBBY MASO Staff Writer Imagine being at a crossroads in life, preparing for the transition from boy to young man, yet not being able to do common things like spending time with friends, playing football in the backyard or even riding a bike. That is the life 13-year-old Josh Rusnock of Freeland lives every day. On the surface, Josh looks like an average teenager. He loves most sports, and watching some of his favorite teams, the Houston Rockets of the NBA, the NFL's Philadelphia Eagles and the Boston Red Sox. He also enjoys spending time on his uncle's fishing boat where the two like to talk about, what else? fishing. But under his smile and quiet demeanor is a world hard for most to fathom. Josh's condition, a degenerative nervous system disease known as leukodystrophy, often makes it hard for him to go to the bathroom unassisted or climb the steps inside his home. His hands shake so hard sometimes that if he were holding a glass of soda, the drink probably would spill all over his lap. As hard as it is to imagine, it's even harder for Josh, his mom, Rachael, and their family to live through day after day. Rachael has taken Josh to numerous doctors. Some of them are in awe of the rare condition, while others, including a doctor from The Children's Hospital of Philadelphia, have traveled the world, to places like Amsterdam, where the majority of cases exist, just to learn more about leukodystrophy. Now, Rachael, along with her friends at the Tresckow Fire Co., are preparing for a benefit dart tournament, silent auction and bake sale to be held Sept. 13. They're hoping to raise enough money so that she can purchase a vehicle large enough to accommodate a power chair that Josh will receive next month, something he needs just to get around. His mother is hoping that the community can help by donating money or items that can be sold at the auction. "Right now, all this is for is to raise enough money for Josh so that I can get a van or a vehicle big enough for his chair. And what we're really looking for are food donations, like buns or pierogies, or items for the auction. Whatever anybody can give would be so appreciated, you have no idea," Rachael said. She explained that the disease has taken a lot out of Josh, whose life "used to revolve around the Freeland YMCA. Now he's forced to stay inside and can pretty much just play video games." Leukodystrophy comes in many forms and closely resembling multiple sclerosis, thus causing many victims to be misdiagnosed. The disease is a rare genetic disorder that affects the central nervous system by disrupting the growth or maintenance of the myelin, a fatty "white matter" that protects and insulates the body's nerve fibers. It's a progressive disease that usually gets worse as time goes on. There are about 70 documented cases of leukodystrophy worldwide, and as of now, there is no cure. "There are 34 different types of leukodystrophy, but Josh displays symptoms of all of them, so it's hard to pinpoint exactly which one he has," Rachael said. Josh began showing signs of the disease at age 4 but was not officially diagnosed until he was 10. All the while, Rachael has been taking Josh to doctors and specialists all over, causing the medical bills to mount and making it impossible to buy the van. "It's gotten so bad that we've actually moved in with my mother in Weatherly because she has a bathroom on the first floor, so Josh won't have to go upstairs. Sometimes, he has to crawl on his hands and knees if he has to go to the bathroom, it's been so bad lately. It's just very difficult," Rachael said. To help ease the family's financial burden, a special account has been set up at Bank of America, where anyone can make a monetary donation to the Joshua Michael Rusnock Medical Fund. Donations can be made at any Bank of America branch, and Rachael said all are appreciated. Josh's mom and other siblings, brother John, 15, and twin stepbrothers Trevor and Derek Remak, and his other relatives hope that spreading the word about leukodystrophy will help others who might be experiencing similar health issues but do not know they have the disease. "I just want to help spread the word because it's very possible that someone else might have this and not know it," Rachael said. "Like I said, it took Josh's doctors a long time to figure out what it was and I'm thinking that there might be others out there who are suffering the same way Josh is, and might be diagnosed with something else because a doctor is unfamiliar with leukodystrophy. I just don't want anyone to have to go through this." Anyone interested in donating toward the Sept. 13 benefit can contact Jennifer Coxe at 570-427-3329 or by e-mail at jen3329@verizon.net. Donations can also be made by calling the Tresckow Fire Hall at 570- 455-5701. bmaso@standradspeaker.com Bobby Maso Standard Speaker Newspaper 21 North Wyoming Street, Hazleton, Pa. 18201 570-455-3636 Ext. 3588 bmaso@standardspeaker.com Click here for more information on Leukodystrophy >>> http://www.ninds.nih.gov/disorders/leukodystrophy/leukodystrophy.htm Events coming up for Josh; CHINESE AUCTION & BAKE SALE 9:00 am to 5:00 pm To make a donation contact Jennifer Coxe @ 570-427-3329 DART TOURNAMENT Teams are still needed Registration at 11:00 Contact Rich Contrady 570-455-5701 To benefit Joshua Rusnock Saturday, September 13th, 2008 Treskow Fire Hall 26 East Oak Street, Treskow A variety of food will be available for purchase. Fri, 12 Sep 2008 11:33:33 -0500 http://www.yardbarker.com/author/article/331977 http://www.yardbarker.com/author/article/331977