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Post by Jennifer on Feb 11, 2005 19:01:02 GMT
I need help...My daughter has a rare syndrome called Oral Facial Digital Syndrome Type IV. Is there anyone out there that either has a child with this condition, or know anything about it? There isnt much information on the web, or anywhere for that matter. Some underlying conditions with this are: Lissencephaly, microcephaly, hydrocephalus, seizure disorder, asthma, reflux, extra digits, hypoglycemia, she is terminal...and much much more. I would like to find someone going through or has gone through some of the same experiences that i am. Please reply if you are....I feel alone emotionally when it comes to raising this child.
I have alot of support but i would like to find people who UNDERSTAND what i am going through.
Thanks Jen
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pam
New Member
Posts: 3
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Post by pam on Feb 12, 2005 4:30:39 GMT
Hi Jen, I guess I don't have any experience with your daughters condition, but do understand what your going through. My daughter was diagnosed with Pachygyric Lissencephaly, after spending the first 2 weeks in the NICU and going through test after test until they figured out what was wrong. This form of Lissencephaly is also very rare and no one knew anything about it other than the doctors. Her condition left her with having seizures 24 hours a day, and having every type of seizure there is to have. She was cortically blind, which meant no eye contact, no voluntary body movements only what the seizures did to her, and no form of verbal communication. She was also terminal, so they said, from the day she was diagnosed. She for sure wouldn't make it to the age of 2, well she surprised them all for almost 6 years. She passed away last April, 1 month before her 6th birthday. You will feel alone and lost a lot, because there is so much to learn and try to understand. But it sounds as though you have good support, which is the most important. If I wouldn't have had the support of my family and friends, I don't think I would have made it through it all. You just need to follow your instincts and do the best you can. As her doctor used to tell me "You're her mom, you know what is best for her." You need to remember that, listen to all their advise and do what you feel is BEST for her and yourself. Take each day at a time because each day is different , it might be worse but it also may be better. After all that I went through, if given the chance I would do it all over again. I think the best way to describe these children is they are "Angels sent by God". Because they touch your heart in a way you never thought possible. Take Care and Good Luck! Pam
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