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This fundraiser ended on 07/21/10

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My daughter was born on November 21 of 2009 with a very rare disorder call Freeman-Sheldon syndrome

my daugter was born with a very rare freeman-sheldon syndrome she was given a 5 percent chance of living after birth and she just turned 4 months old.. she is a major fighter. Allie was also diagnosed with scoliosis kyphosis with a 90 degree angle wish is making it impossible for her to be able to breath on her own and making her upper extrememites smashed together. so she  was trached and vented untill her surgeries for her back which will hopefully correct her major issues of being able to make it to an older age. she has also had a peg put in due do to her oral aversions which she wont eat by mouth  she was also born with club foot which has been casted on and off for over 8 weeks.. im calling out for help from anyone who would help our family with saving our home and her expenses that she needs for her daily living. this is oe of the most stressful and hardest thing out family has ever had to endure.. allie has an older 20 yr old brother who loves her dearly which i know he is needing some major coping help and him needing a thereapist to speek to help will also be benifited with any help from everyone, allie needs special formula for reflux issues and splints to help correct her wrist and hanf contractures any help would help get us to specialist in chiacgo and back and her daily needds for to stay healthy at home with special care around her sites and to trnasfer her from place to place with oxygen and vent and feeding tubes. ots a blessing allie has 16 hours a day with nursing but also really hard to deal with when ur world is completely turned upside down and not how its supposed to be im pls asking for any help to help us with our bills to be able to keep her stable and in a stable  enviroment and gas and generator which she needs if power is lost say do to storm and special strolller for all her supplies to go to point a to point b and many many other things like the increase in bills and medical bills and coping help, and imn sure alot more im leaving out but as u see its hard for me to think straight we have so much on out plate and a feeling of hoplessnss with nowhere to go. my husband was just laid off and we cant really afor anything and we really need help for allie and usso if u have in ur hearts pls can u help... thank you so very much and if any questions pls ask me  im sure i left alot out and left alot of things i thought might not be appropriate in this discription. thank you again.. lafavre fam

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