Vici Syndrome: Emmy's story | Action Medical Research

[@Homeschool-Define]

I am sorry the doctors didn’t listen to you until you met the right one. You are a strong family and i wish you all the best.

[@eugenieskinner512]

You are an incredible and beautiful family. ❤ xxx

[@sarahelliott7926]

She seems happy, and loved. I hope that someday they are able to come up with a medication or treatment that will slow the progression of this disease until a cure is found!❤❤

[@cherjohnson5807]

Thank you for sharing❤

[@lindamarie6574]

God bless your family!

[@icare4you123]

Heartbreaking. Since it's such a rare disease I wonder if it doesn't show up in prenatal testing like Downs Syndrome does. Emmy seems like a happy little girl and she's well cared for. May her family find strength and peace.

[@BenjaminIsMYKING]

🙏💜🙏💜🙏💜🙏💜🙏💜🙏💜🙏

[@MarijkeRuiten-zm4zg]

m.kzbin.info/www/bejne/p5KYfI2be9d_l9E&pp=ygUOSGVzc2VsIGVuIE1pbGE%3D I was a mother of two Vici children, here is our movie. I recognize a lot in your movie. Answers to the other replyers: There is no cure for chromosomal rare diseases. The group of Vici is far to small for a regular test. Only when it is known in your family you can ask for it. As parents you are both carrier of the fault chromosome. Than it is a change out one of four you will have a Vici child! Down syndrome is a very common group, that is why it is standerd tested if you want.

[@Ryan-hc5sm]

'PromoSM' 🤪