C17

Michelle - posted on 03/27/2011 ( 3 moms have responded )

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Looking for others with C17q21 deletion. My daughter is 4yrs old, and I would love to meet other parents with children who have the same deletion.

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Heather - posted on 05/28/2011

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You may want to check out www.cod.org www.rarechromo.org www.ncbi.nlm.nih.gov/omim to see if there are any connections to people there with your daughter's specific deletion or maybe at least more information for you. I'm 22 weeks pregnant and our son was just diagnosed with a C17p12 deletion. We haven't seen the Genetic Counselor yet and have no idea what this means. We can't find any information on it and have no idea what his prognosis may be...We can't find anything from any of the rare chromo sites or even google searches! Very frustrating and isolating! Wishing you all the best with your beautiful daughter.

Louise - posted on 03/27/2011

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I think your best bet is to contact the hospital and see if they can help you by recommending someone to help.

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