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| NUCDF |
| UCD KIDS |
| Welcome to C KIDS Argininosuccinic Acid Synthase Deficiency, Citrullinemia |
| PLEASE, WHATEVER YOU READ HERE OR ANYWHERE ELSE, NEVER EVER MAKE CHANGES TO YOUR CHILDS TREATMENT PLAN WITHOUT DISCUSSING IT WITH YOUR METABOLIC DOCTOR FIRST!! WHAT WORKS FOR ONE COULD POTENTIALLY HARM OR KILL ANOTHER!!!!! |
| This is our little girl Destiney Marie who is now 5 1/2 years old! This past year has been quite eventful with many ups and downs. We almost lost her in February due to the flu but she seems to have bounced back. At that time she finally got her G-Button which I'm sorry to say she is not all that pleased with. She can sit and spin it around but don't anyone else think of messing with it! She went through the testing and was found to be Autistic and now we can get her into the best type of program for her in school where I know she'll just take off. She's basicly nonverbal tho words are coming out more and more now. She loves water and would be in our pool morning noon and night if she could. She's the happiest little girl most of the time with such an infectious laugh (quite often at 4 am!) that you can't help laughing along with her over nothing. Destiney has been seizure free for a couple years now, thank you God, and has been off all seizure meds with no signs of any seizure activity. Every day is an event with Destiney that I cherish and learn from. Please feel free to email me or visit our discussion board and "chat" along with other families dealing with similar situations. |
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| Center For Autism |
| If you are new to Urea Cycle Disorders please visit and join the National Urea Cycle Disorder Foundation! We need to stand together and be counted! Our children's lives depend on it. "They" are us, the families, and we can only be heard if we are one loud voice. Let them know you're out there and register your child. Come to the Annual Family Meetings and meet the leading researchers and other families dealing with similar situations and most of all LEARN!! |
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| ASA KIDS |
| It has come to my attention that there are people out there who are accessing sites like mine and discussion boards with the intention of collecting information for insurance co.'s and other groups to discriminate against our kids! I find this totally offensive that someone would intentionally harm a child in this way! It does harm them when they can't receive the treatment they need because it isn't finacially in someone elses best interest! To think someone would profit from undermining a child's chance at life is sickening! May God have pity on their souls! If you are one of these people, remember, there by the grace of God go I. Some day it's very likely one of your loved ones will find themselves in our shoes! Think about what you're doing!! |
| C Kids is not affiliated with NUCDF, we just love & respect them! |
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| TRUE KIDS |
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| Please sign my Guest Book! I'd love to know who you are and what you think about this site! |
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| Last Updated 5/6/2004 |
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