A loving letter from Oliver’s Mom:
“Oliver has Kabuki Syndrome (read more about this syndrome below), he spent almost three months in the NICU due to hyperinsulinism, and with a high arch palate, he couldn’t do oral feeds. We didn’t know he had kabuki syndrome until we had been home a few months. He learned to walk at age 26 months after lots of therapy. He is non-verbal and communicates using an IPAD at the new B.E Smith Family center. He is also going to start some therapy at our local elementary school and they also have access to an IPAD/proloquo2go. He has low muscle tone, as well as developmental delays. He is in therapy 4 days a week and works really hard, but communication is our biggest struggle. We have taught him some signs as well.
Oliver is the youngest of five and tries really hard to keep up with his siblings. Our biggest goal is to help Oliver be able to communicate what he needs/wants to us so that we can better help him. Oliver is a determined, hard working boy who goes to therapy several days a week to try and work on speech, feeding, physical therapy and occupational therapy. He works very hard and we know that this would be a great resource for him. When you watch Oliver use the IPAD at school to communicate with his speech therapist you see his face light up as he hits the button and can hear the app saying what he wants to say. It is like he is saying YES that’s what I have been trying to say. He gets frustrated easily with us when we don’t know what he wants and that is hard to watch.
Our biggest goal for Oliver will be to have him in a regular class setting in two years when he starts Kindergarten. How great it will be to watch him communicate with his peers through this app on the IPAD. We have four other children that just want Oliver to be treated like everyone else and we want nothing but the best for him. Communication is such an important part of life, this gift would be such a blessing to our entire family. Thank you for giving Oliver the gift of communication, we can’t thank you enough.
Oliver is such a fun loving kid, he loves to laugh and play with his siblings. Our favorite quality is his determination. We have had doctors tell us Oliver would never crawl, walk, eat orally…..but just watch him defy odds and prove everyone wrong. This is priceless for us, we have no limits set on what Oliver can accomplish. We are just along for this amazing journey. Every milestone is a BIG deal in our house.
His favorite things to do are jump on the trampoline and swing on the swings outside. Garfield is his absolute favorite and he could watch that crazy cat all day if we let him. Music is Oliver’s absolute favorite and he will do anything for music.
Variety KC is in awe of Oliver and all he’s accomplished – and Oliver will get his communication device. Help other young heros like Oliver to be able to communicate their wants and needs. Donate today at varietykc.org/donate/
About Kabuki Syndrome: Kabuki Syndrome, 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 Kabuki theater. People with Kabuki syndrome have mild to severe developmental delay and intellectual disability. 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 (pinky) 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.
