chromsome 14 q12

Hello this is Olivia Mae Rose, she has a very rare condistion chromosome 14 q12 deletion, and deletion of the fox g1 we are hoping to hear from anyone who may be able to help us with her condistion

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[kellyatirwin]

Olivia is beautiful. There is an organisation called unique, its a group for rare chromosome disorders.

you should join their group on facebook and also get in contact with my cousin, Aine Green, whos little boy has deletion 14q12, she would love to hear from you! x

[gedmac123]

@kellyatirwin Thank you Kelly for all your information, We will get in touch with your cousin Aine green and maybe we will be able to give and receive some useful information. We have been in touch with unique .. has your cousin been in touch with francis house they are a brilliant organisation in manchester. Could you tell me if archie has the fox g1 gene deletion. Thank you x

[gedmac123]

@kellyatirwin Olivia suffers from reflux as well it took doctors nearly 8 months to diagnose her condistion, she was in so much pain for so long crying day and night we went to the hospital so many times and was told she was a perfectly normal baby and babies cry.. now she has ranitidine and enfamil and seems to be doing ok, she has just started eating blended food as well

[87maccyd]

hi, my son and i have just both been diagnosed with 14q12 deletion!!!! im totally confused and all over the place about the whole thing as there is just no information about it besides severe mental retaradtion etc etc but my son nor myself are like that?? im so worried, any onfo u have please let me know, my email is kayleigh-hartey@live.co.uk

[kellyatirwin]

@gedmac123 No Archie doesnt have fox g1. He's just got out of hospital, he had an op to have a gastromy in his tummy for his reflux. He is on oxygen 24/7. What does Olivia suffer with? x