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Hello, I just found this site and group. I have a 9 year daughter with late on set FARS2 Deficiency. We live in Florida, USA. I have yet to connect with others with this genetic defect so I am was excited to see this group exist. Thanks for setting this up. I am curious to know about you or your loved one and where you are from if you are willing to share.
Ten post pochodzi z sugerowanej grupy
My 10 year old adopted son was diagnosed using whole exome with REEP1 variant. I am so happy to find this group! Please keep sharing!
Ten post pochodzi z sugerowanej grupy
Ten post pochodzi z sugerowanej grupy
Welcome Ole Ralph , great to have you join us here.
Ten post pochodzi z sugerowanej grupy
Welcome, Nasly!
Ten post pochodzi z sugerowanej grupy
Ten post pochodzi z sugerowanej grupy
Ten post pochodzi z sugerowanej grupy
Thanks for joining, Nasly and Dario!
Ten post pochodzi z sugerowanej grupy
@naslyrr and Dario, we're very glad you found us. Im sure you'll make some new friends and learn about the disease. Thanks for sharing the photo.
Hi All, So happy to see these replies. Greetings from Ireland. We have a five year old boy. I am the carrier so awaiting neurologist appointment in July. Same therapies AFOβs physio night time cast for right leg only. Hard at the moment with AFOs as to why I canβt do what other kids do and the AFOs are heavy and awkward.