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Are there any sponsors that would help children with rare disorders? Please help?
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Default Are there any sponsors that would help children with rare disorders? Please help? - 12-27-2008, 07:22 AM

My little sister is diagnosed with GTP Cyclohydrolase, PKU, and Segawa's Dystonia.Seeing as these are all degenerative and GTP is known as pretty rare, I am asking about sponsors that can help my family.I mean, anyone who knows about these disorders (especially GTP) would know that food ALONE is very pricey.I'm talking almost $40 for four boxes of special flour that are less than a pound. That's a week of groceries for some people!Also, special tools like a training walker and leg braces. She can't go outside much to walk without these.So yeah, does anyone know any organizations/sponsors that would help her?Please let me know! Thanks!@ Answerer1: Haha, sorry, when I said GTP I just was shortening the disorder GTP Cyclohydrolase which deals with the GTP (evidently). Thanks for your input, also!
   
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Default 12-27-2008, 11:13 PM

Apply for state and federal benefits that ensureyour sister will get the meds and doctors she requires.NORD - National Organization for Rare Disordersmight be able to provide you with a list of doctorswho are versed in the conditions you describe.Also, GTP is a nucleotide, I'm not really sure howit factors into what you present.
   
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Default 12-30-2008, 10:53 AM

You might want to get the ball rolling on some type of benefit in your sister's honor to collect donations for her care. Talk with your sister's school counselor and ask about setting up a benefit. I'm sure he/she will know how to get the ball rolling. You could also have bake sales or some type of raffle too.Does your sister have a celebrity she'd like to meet or a place she'd like to go to? Contact the Make-A-Wish-Foundation and they will do what they can to make her wish come true. Good luck.
   
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