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Kabuki Awareness for our daughter Lilly

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My wife and I are doing our annual Kabuki Karnival for children like our daughter Lilly, with Kabuki Syndrome. It is a chance for families that have children with this rare syndrome to get together and visit. This is our second annual Karnival and we could use your help. We are selling “Buki Bears”, a nickname that most parents call their children, as a way to raise money to support our get together. The Karnival is free to all families that attend as many drive from all over the Midwest. We are providing lunch and prizes for the games. Our Church has donated their facility as well as inflatables for the kids to “bounce” on. The bears can be bought and shipped out to you the purchaser, or they can be bought and donated to families of children with Kabuki.

You can place your orders on our Church’s website @ www.OrchardHillAG.com

Thank you for your support!!

Lilly is the one in the center of the photo below.

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Posted · Report post

Forgive my ignorance, what is Kabuki?

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What is Kabuki syndrome?

Kabuki syndrome is a disorder that affects many parts of the body. It is characterized by distinctive facial features including arched eyebrows; long eyelashes; long openings of the eyelids (long palpebral fissures) with the lower lids turned out (everted) at the outside edges; a flat, broadened tip of the nose; and large protruding earlobes. The name of this disorder comes from the resemblance of its characteristic facial appearance to stage makeup used in traditional Japanese theater called Kabuki.

People with Kabuki syndrome have developmental delay and intellectual disability that range from mild to severe. Affected individuals may also have seizures, an unusually small head size (microcephaly), or weak muscle tone (hypotonia). Some have eye problems such as rapid, involuntary eye movements (nystagmus) or eyes that do not look in the same direction (strabismus).

Other characteristic features of Kabuki syndrome include short stature and skeletal abnormalities such as abnormal side-to-side curvature of the spine (scoliosis), short fifth fingers, or problems with the hip and knee joints. The roof of the mouth may have an abnormal opening (cleft palate) or be high and arched, and dental problems are common in affected individuals. People with Kabuki syndrome may also have fingerprints with unusual features and fleshy pads at the tips of the fingers. These prominent finger pads are called fetal finger pads because they normally occur in human fetuses; in most people they disappear before birth.

A wide variety of other health problems occur in some people with Kabuki syndrome. Among the most commonly reported are heart abnormalities, frequent ear infections (otitis media), hearing loss, and early puberty.

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Thank you Bob!!!

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IMG_8981.jpg

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Not to be uncaring... but dang, that's a nice Mustang!

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I agree Harry, and she is a cutie too. Thanks Bob for the info.

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She looks like she has her hands full Kerry! She's got more fuzzy friends than Kermit! :lol:

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True she does Marshall. You should see her room!!!!

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She looks like a real sweet kit Kerry....good cause too.

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Sure is Mark, she's a real treat to have in our lives!!!!

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True she does Marshall. You should see her room!!!!

In other words, if she gets anymore stuffed animals, by law you have to put a Toys-R-Us sign on her door?

She has that if you try to take any of these out of my hands look that say's: "Do you feel lucky punk? WELL? DO YOU?!?"

(sorry, I just can't help myself... She is adorable!!!)

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In other words, if she gets anymore stuffed animals, by law you have to put a Toys-R-Us sign on her door?

She has that if you try to take any of these out of my hands look that say's: "Do you feel lucky punk? WELL? DO YOU?!?"

(sorry, I just can't help myself... She is adorable!!!)

lol, well the one thing with Kabuki kids is that just about all of them have the same look and facial looks about them. Put them all together and they could pass for brothers and sisters.

One thing is that if you asked her to see her animals she's let ya, big sweet heart!!! LOL

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Thank you for bring this to our attention

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welcome Dave,

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Well, you and your wife are doing an awesome job. She looks content.

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Thank you Marshall, we are doing a good job

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