I don't know if I have ever told you all about a good friend of mine's daughter...
She is almost 8 and has a disease/handicap that has made her immoble.
She was born perfectly healthy and developed normally until around 18 months, then she started to diminish out of no where. Nothing happened, there wasn't an accident of any sorts...Nothing.
The doctors have yet to find out what is wrong with her. She can't see, she can't talk, she can't move and she can't eat and recently she has started developing iron on her brain. The doctors are beside themselves and have no hope for her and expect her to live no more than a year from now.
My friend (her Dad) and his wife have taken her to so many doctors. They went to a thing that Shriners did and after waiting 8 hrs, the doctor picked her up and looked at her and said "I don't know whats wrong" (or something to that degree). My friend has even contacted a famous person who had a child that seemed to have the same symtoms as her, but it turned out to be a bit different, so that was a dead end too.
I am reaching out to you all, because I don't want this sweet little girl to pass and them not know what it was....
It's an odd case, I just wish they had some answers, KWIM?

Anyway, any thoughts would be nice.....Prayers for his family would be great too!
Thank you

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How very strange...and nobody has a clue? Wow. I pray that they find some answer, somewhere. Have they contacted the local and national media, to reach out? It seems like People magazine would be interested in this.

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There is a disorder that sounds like that and unfortunatly the kids don't live past ten. It is a metabolic type of disorder and later if I remember the name I will PM you with it. Has your friend tried the boards over at rare diseases/disorders? They are very nice and may lead your friend in a helpful direction. Until then, I will say a pray for you.

Thank you for the prayers, it means a LOT.


They haven't contacted the media yet, I will mention that to them.

As far as boards go... They are on the internet constantly and have come across so many cases that are similar, but nothing exactly like hers.
The doctors just have no idea and the recent find of iron on her brain has baffled them even more.
It's heartbreaking to say the least.

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