Kleefstra Syndrome Awareness Day

Today is Kleefstra Syndrome Awareness Day!!!

{Photo created by compliments of a fellow Kleesftra Mom}

Landon was diagnosed with Kleefstra Syndrome just last September; after months of unknown reasoning behind developmental delays. As of today, I haven't been able to come in contact with other Kleefstra cases in my area; but I've been fortunate enough to locate many families via Facebook with Kleefstra kids.

Yesterday we visited the Neurology Department for our yearly follow up, since receiving the diagnosis and the doctor stated Landon was her only Kleefstra case, which further confirms the rareness of this syndrome.

I'm thankful for the relationships I've found via Facebook. It not only helps me better relate to dealing with this syndrome but continues to educate me as each case has it's severity of differences. As Landon's mother it's my duty to advocate, educate and provide awareness, as I learn each day myself. One of my reasons for me blogging, which is what I call "Expressive Acceptance" is for that reason. And it's where my vision of branding my own support group stems from. I figure I can be the voice for someone who doesn't want to speak, but needs to know and also provide a comfortable family orientated setting where we all learn to deal with our journeys together, because it really takes a village. Not only for Kleefstra kids, but kids with other special needs, rare genetic syndromes and developmental delays as well. Unfortunately the process with this vision hasn't been as easy as I thought (as I've already received my first denial) but I'm remaining positive and will continue to push to make this vision of mines come to light.


Below I have provided the verbiage breakdown that one of the Kleefstra moms provided for us to circulate via FB {w/photo above}on the reason for acknowledging Kleefstra Syndrome Awareness today.

"Why 9/17? Chromosomes are the structures in each of the body's cell that carry the genetic information that tells the body how to develop and function. They come in pairs, one from each parent and are numbered 1 to 22, each chromosome has a short (p) arm and a long (q) arm. KS is defined by anomalies on the Q arm (Q is the 17 letter of the alphabet) of the 9th chromosome. 
9/17 became the KLEEFSTRA Syndrome Awareness Day this year".


For more information on Kleefstra Syndrome visit www.kleefstrasyndrome.org