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Christian

10

Age:

Therapy Room

Kubaki Syndrome

Ten-tear-old Christian is referred to endearingly as "Wild Man.” He is wild for Mickey Mouse, singing, colorful lights, and his five dogs and two cats. The chaotic day-to-day parenting of Christian is both exhilarating and exasperating. Most families ultimately get respite from their busy children, but Christian requires an incredibly demanding level of care. He was diagnosed at 3 1/2 years old with Kabuki syndrome (also previously known as kabuki makeup syndrome, KMS, or Niikawa-Kuroki Syndrome). This multisystem disorder is characterized by multiple abnormalities, including distinctive facial features, growth delays, varying degrees of intellectual disability, skeletal abnormalities, and short stature.
Many doctors told Christian's parents he would never walk, but one doctor gave them hope that he might. They never gave up. Thanks to long, intensive days of therapy, Christian, at nine-years-old, began walking with the assistance of his red walker sporting a "Wild Man" sign. In addition to physical therapy and occupational therapy, his days include GI tube feeding, which is often slow, and schooling. To keep Christian safe, he must be supervised every moment of the day. Despite the challenges of caring for the "Wild Man," the day always ends with bedtime prayers of gratitude from Christian's parents.
The sensory stimulation of a therapy room from Sunshine on a Ranney Day would make day to day life much safer and the rigorous schedule more manageable for Christian's parents. Christian will have more time for traditional childhood pleasures like zipping about with his walker, laughing at Mickey Mouse, and frolicking with his numerous pets.