Scottsdale, AZ, June 28, 2009. Dr. Susan Skidmore, Member of the Governing Board for the Paradise Valley School District addressed the seven hundred plus graduates of Horizon High School. Close to the end of her speech she said I would be remiss if I did not acknowledge this graduate, Elliot Jack Richards, please stand. The crowd cheered. Mr. Richards, you are an inspiration to us all! The stadium filled with friends and families of the graduates stood and applauded for this remarkable young man.
What is it about 19 year old, Elliot Richards that inspires us? It is his determination in the midst of obstacles. It is his passion to participate. And it is his love for life and people. You see, nobody told Elliot he had a syndrome or that he was different.
At birth, Elliot was, failure to thrive, and in 1992 finally diagnosed with Kabuki Makeup Syndrome, a mutation that carries with it multiple anomalies. Kabuki syndrome is rare, estimated at 1:32,000 births. The initial, apparent deformities were cleft palate, hypotonia (often called floppy babies), underdeveloped hips, connective tissue disorder, some retardation and lack of involuntary reflexes such as not being able to initiate a swallow.
Kabuki was initially recognized in 1981 by Dr. Niikawa and Dr. Kuroki, The name "Kabuki make-up" was selected because of the facial resemblance to the makeup of actors in Kabuki, traditional Japanese theatre. The first diagnosis made in both Europe and America occurred in 1990, the same year Elliot was born in Chandler, Arizona.
Elliot was fed with a gastrostomy tube directly into the stomach until the age of three, did not walk until he was four and his fine motor skills have prevented him from learning to tie his shoes, button his shirts and write in cursive.
Through the years underdeveloped organs and functions were discovered and required surgeries to correct. Although he has had several constructive operations on his hips, he still walks with a limp. This year he faces several more surgical procedures; one on his jaw followed by dental implants. To date, Elliot has had over 19 surgeries.
With no prognosis, The Richards family foresaw a future filled with medical intervention and therapy to help his little body grow. It was unsure what Elliots life would be like and what he would be able to accomplish. But Elliot didnt know that. He saw his limitations and medical procedures as detours and minor setbacks.
His family, friends, educators and therapists have cheered him on along the journey. But it is Elliots refusal to fail and fortitude to thrive that touches lives and gave him success.
Elliots life has inspired others to see life in a new perspective. He participates and involves himself in activities, social events and extra-curricular programs outside of the resources offered to special needs students. It is because he doesnt see himself any different.
The internet has enabled Kabuki families to reach across the globe to support each other. Kabuki Moms in Australia were hoping to locate an older Kabuki Kid when Elliots mom happened to contact them. I had just received a telephone call, said Peta Colton, Founder of SAKKS (Supporting Aussie Kids with Kabuki Syndrome) asking if there were older Kabuki kids when Elliots mom called and whilst there isn't a crystal ball, it does give parents reassurance that there is a positive tomorrow.
In the Fall, Elliot plans to attend the Special Services Program at Eastern New Mexico University in Roswell. There he will learn life skills, an occupation and enter the next phase of independent living.
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Hypotoniaby boonzreiner39,427 views
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