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Hi. I've sent this note to everyone and thought I'd send it along to you as well. This letter is just a draft- didn't even include the date- it's to be Oct 21st in Ft. Wayne, In. Anybody close to Ft.Wayne??? Will include a couple of pics of Maddie,too.(great, now I can't get photos on-brain dead, or just tired- will add some when I can remember how to do it). Anyone have any suggestions or ideas for the fund raiser? Here's the letter... " Hello.I'm Madelyn Zelt and I have Dejerine Sottas Disease, a form of Charcot -Marie-Tooth Disease .It is a neuro-muscular disorder that causes damage to the lining of the nerves.(I am an MDA child-one of Jerry's Kids).I have a gene that caused this.
I have trouble swallowing,reflux problems, can't stand alone(have had several sets of braces already), and can't walk yet even though I am 17 mos old now.I have physical, occupational , and speech therapy several times a week.I take many medications and have a jg tube with a kangaroo feeding pump 20 hours a day.My special formula costs $1000.00 a month.We go to Riley Hospital for Children In Indianapolis several times a month to see my many wonderful doctors there who are treating and helping me . The kind people at St.Peter's Lutheran Church and Thrivent are doing a fund raiser-a fish and chicken dinner, silent and live auctions and a bake sale to help my parents pay for all my many needs now and in the future.They could use donations of time to help with the dinner,auctions and bake sale.We could also use donations of baked goods, and items for the auctions. All your help will be appreciated my me and all who are helping me.Thank you. Love, Maddie "

sorry, can't get photos on. Will send some on another post tomorrow.-Robin
 
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