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Name: apeanutgallery
[ Original Post ]
I have not found anyone else with a child with Acrodysostosis? Am I the only one? I guess in the grand scheme of things this is not the most debilitating condition but I could still use a k indred spirit. My 6 year old daughter has this condition. I would also like to iear from anyone with a special needs child and can offer support. I invite you to visit my blog at http://specialneedsandfamily.blogspot.com/
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Name: Cecilia | Date: Feb 11th, 2008 1:27 PM
Hi! My name is Cecilia and I live in Sweden with my family. Our son Gabriel (3 years old) was diagonsed a week ago with Acrodysostosis. It is not 100% sure yet but we feel quite sure the diagnosis is right based on what we have read on the internet about the disease. I am happy to be a support for you if I can. How is your daughter now? When did you get the diagnosis. You can email me on [email protected]
Best wishes and I look forward to hear from you soon! Cecilia 

Name: mom2relate | Date: Nov 3rd, 2011 2:41 AM
My daughter is 7 she was just diagnosed with acrodysostosis I'm lookin for other people that may have some insite on wat to expect my email [email protected] 

Name: Debi Shankles | Date: Dec 7th, 2011 8:50 PM
my 25 year old son has this condition, he was diagnosed at about the age of 8-10 

Name: Chatty656 | Date: Jul 9th, 2012 6:41 AM
My son is currently 12 and has been diagnosed with Acrodysostosis since around 1 years old. I have just recently started a group on face book for families affected by this genetic condition. Also I am always looking for anyone to discuss issues with. My old group has kinda disappeared over the years and I have been trying to find all of them. I have learned a ton of stuff over the years and would love to share it with you. First I can tell you, almost all the kids who have Acro. tend to look alike, one thing we figured out, that wasn't in any searches, all the kids have different shades of red hair, from bright red down to brown red. Please feel free to go to facebook and look up acrodysostosis or email me @ [email protected] Look forward to hearing from you. 

Name: me | Date: Jul 23rd, 2012 2:07 PM
i work with a young lady with acrodysostosis. i will visit your blog 

Name: Phil Woods | Date: Dec 20th, 2013 6:27 PM
I have been trawling websites looking for others with experience of Arodysotosis, our daughter is awaiting test results for confimation and it’s been 8 months since we first had tests with the genetics dept at St Guys hospital London but we are 99% sure that it’s Acro.

I have tried facebook, but cannot find any groups?

Any assistance with links to other people or information and experience would be greatly appriciated.

Many Thanks

Phil Woods 


Name: Phil Woods | Date: Dec 20th, 2013 6:29 PM
Sorry I should have left my email [email protected]
or personal email [email protected] 

Name: Phil Woods | Date: Dec 20th, 2013 6:30 PM
Sorry I should have left my email
[email protected]
or personal email [email protected] 

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