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Mother Of Julia

Julia is perfect just the way she is, but we want to be sure and help her be the BEST Julia she can be! That's what we've said for nearly 7 full years now.

We noticed she wasn't hitting all her major benchmarks as early as 9 months old. Ever since we've been looking for answers. She is now 7.5 years old and thanks to a brand new testing, we have answers!

Coffin-Sirris Syndrome was found! Interesting that she doesn't have the 5th digit portion but many other symptoms are right on... We're anxious now to see what works to help people with this, perform at their BEST!

I wish all who have this well and will continue to pray for more answers for us all!!
tchavira tchavira 31-35, F 3 Responses Jul 21, 2012

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Hi my name is Emily and I have Coffin Siris Syndrome and I am 24 years old and there is a group on facebook with people that have it

Thanks for posting! In my experience,the sky is the limit with CSS. You get out what you put in to your child! God bless you as you nurture and love Julia!

Can't agree more - we think our six year old is pretty amazing and has been through so much! We just found out our son also has this syndrome. We meet with genetics tomorrow. I'd love to hear more about your Julia!