BENEFITING: MONTEFIORE MEDICAL CENTER
October is Rett Syndrome Awareness Month!
Please help us raise money for a cause that is very close to our hearts.
Kylie is a beautiful angel that was born November 28, 2005. She was a good and healthy baby girl. She reached all of her milestones on time by the age of 1. She could walk, had words, loved books, loved music and dancing.
However, shortly after her 1st birthday, it all changed. She began to cry excessively, didn't want to be held and seemed so scared. She completely stopped talking and slowly lost all purposeful hand function. We had no idea that Rett Syndrome was "stealing" our healthy and normal baby from us and would eventually "trap her" in her own body.
Kylie was misdiagnosed with autism. It was several months later through blood work that we found out she had rett syndrome. The doctor on the phone could not stop apologizing and said most girls don't live past the age of 8! Kylie was 2 years old at this time. There aren't any words to describe the pain, sadness and helplessness we felt.
During this dark time, a miracle occurred. We found a rett syndrome center online and called it. Can you believe the doctor answered her own phone at the hospital?!?! We told her about Kylie. She asked when we could bring Kylie to see her. We told her anytime . She asked if we could be there in two days and we said YES!
This AMAZING doctor is Dr. Sasha Djukic. She is a neurologist and director of the rett center at Monetfiore. We can never repay her for all that she has done for Kylie and our family. She restored our hope and happiness. She is truly Kylie's guardian angel. She has helped give Kylie a voice with assistive technology. She has proven that Kylie is not "severely mentally retarded and unable to learn" as other professionals had previously told us.
Dr. Djukic works endless hours each day for all of her rett syndrome girls (they come from all over the world to see her). She believes a CURE is near and will not stop working until it arrives.
Please help us raise money for this Rett Syndrome clinic. This clinic does NOT receive funds from the hospital - it is all from private donations (like this one).
Rett Syndrome facts:
*Rett syndrome was first written about by Andrew Rett in 1965, but it was recognized as a condition only in 1983.
*RS can vary in severity from person to person.
*Boys with rett syndrome usually do not survive.
*20 baby girls are born with rett syndrome each day.
*RS occurs equally in all racial and ethnic groups around the world.
*RS is genetic but it is NOT hereditary.
*RS has 4 stages.
*RS caused by mutations on the x chromosome on a gene called MECP2
*Girls with rett syndrome will require 24-hour-care for the rest of their Iives.
***Rett syndrome is a potentially REVERSABLE disorder. RESEARCH has PROVEN once protein levels are back to normal levels, symptoms subside! In 2007, the effects of rett syndrome were reversed in mice. A CURE is near!!!
You can help ALL rett syndrome girls by donating today. No donation is too small.
Love, Robert & Suzanna Friedmann