Today is KLEEFSTRA AWARENESS DAY!!!
Ava is one of only an estimated 400 diagnosed cases in the WORLD!! As the technology grows to diagnose Kleefstra, the numbers are rising. We need to get awareness out there, so that the information is out there to help those that need it. For the past eight years, I have always educated and advocated everywhere Ava went. She is always a first case scenario and I have to take 2-3 binders full of paperwork to every first time appts that she has to make sure the Drs, therapists, etc know what Kleefstra Syndrome is.
I have also written Ava's Blog for the past 8 years. It has been a labor of love, pouring into it everything about Ava and Kleefstra Syndrome. There have been a few times where I thought I would stop it, but then someone always contacts me and tells me how much Ava's Blog has helped them, so I keep at it.
To learn more about Kleefstra Syndrome and how it affects lives go to www.kleefstrasyndrome.org
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