DrKerry Posted October 3, 2014 Posted October 3, 2014 Talk about a turn of events in a persons life. A Doctor out in Maryland that we know has done the almost impossible. He has found a way to reverse Kabuki Syndrome!!!!!!! For those of you that don't know our daughter has a rare syndrome called Kabuki Syndrome and the doctors have been working on finding a way to reverse it. Talk about a HUGE milestone for us!!!!!!!!!!!! For anyone that wants to read the article..... http://www.eurekalert.org/pub_releases/2014-10/jhm-dti092514.php
my80malibu Posted October 3, 2014 Posted October 3, 2014 (edited) Great News, I remember her picture She is Beautiful girl with or without KBS. Edited October 3, 2014 by my80malibu
High octane Posted October 3, 2014 Posted October 3, 2014 That is great news Kerry, and there is hope.
mnwildpunk Posted October 3, 2014 Posted October 3, 2014 Great news 12. Yrs ago they found a way to reverse osteopetrosis (not osteoporosis) which I was born with and had chance to reverse its effects and was the first one too try it. It was a success for me. All the time in hospitals made me a modeler btw. So glad and happy for you and more so for Lilly
Custom Hearse Posted October 3, 2014 Posted October 3, 2014 That is FANTASTIC news Kerry!!! She is such a beautiful child with a heart of gold that I pray that she gets her chance. My best to you, your wife and daughter, and I'll keep praying for her!
Badluck 13 Posted October 3, 2014 Posted October 3, 2014 AWWWWWWWwwwwww that is FANTASTIC news on your sweet baby girl Lilly!!!!!!!!!!!!!!!!!!!,not ashamed to admit when I read this post and link I got a lil' watery eyed .......prayers going on overtime on this end my friend............
DrKerry Posted October 3, 2014 Author Posted October 3, 2014 Thank you everyone, we are pretty happy right now ourselves. Dave, I'm glad to hear that about you and your life. Hoping this will be a huge help to Lilly...
Kennyboy Posted October 3, 2014 Posted October 3, 2014 My friend, I am so happy for you, Lisa, and of course Lilly! She is such a cutie and so deserves this! I will pray for you and your family that God's hand will direct the individuals involved to help you in any way they can.
DrKerry Posted October 4, 2014 Author Posted October 4, 2014 Thanks Ken, good to see you again tonight.. We're hopeful this is going to open so many doors..... I had a scare tonight with her though. On the way to AMG club meeting she had her first seizure. I turned to say something to her and her eyes and face were twitching like crazy. I about crapped, then she came out of it... Life of a special needs child has a lot of ups and downs..... Dave, they say the trials are going to start within the next ten years. Not sure when but... Hopefully sooner than that!!!
mnwildpunk Posted October 4, 2014 Posted October 4, 2014 I read the article and it sounds very promising I hope someone gets their butt in gear for Lilly and others like her
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