According to the U.S. Census Bureau, one in five Americans is disabled and one in 10 has a severe disability. The document also states that one in eight children between the ages of six and 14 has some type of disability. Six-year-old Shaan Joshi is in full-day kindergarten at Newburgh Elementary School in Newburgh, Indiana. He loves riding the school bus and playing on the school’s playground. Shaan is enrolled in a class that teaches basic life skills including self-care such as dressing and feeding himself. He also practices his mobility skills with his walker. He will be in the same classroom until fifth grade.
Doctors called Shaan a medical mystery when he was born in 2005. The one bit of information that they did know was that Shaan’s brain was not quite right. Numerous tests were run and it was found that Shaan had Joubert Syndrome.
According to the Joubert Syndrome & Related Disorders Foundation, Joubert Syndrome is “a rare genetic disorder characterized by decreased muscle tone, difficulties with coordination, abnormal eye movements, abnormal breathing pattern and cognitive impairment.” These impairments are caused from irregular brain development.
Doctors also found that Shaan had Leber’s Congenital Amaurosis, an innate retinal degenerative disease depicted by severe vision loss at birth.
Shaan’s diseases have made him unable to walk, talk, or see.
“I was in a state of confusion when doctors found out what was wrong,” said Elizabeth Joshi, Shaan’s mother. “I had never heard of the disease before.”
Shortly after his birth, the Joshi family relocated to Evansville, Indiana when Shaan’s father got a job at Deaconess Hospital. “I immediately started looking for support groups in the Evansville area,” said Elizabeth. “I stumbled upon Evansville Association for the Blind (EAB) on Google. I was immediately attracted to their motto ‘Educate, Employ, Empower.”
Elizabeth spoke with a representative at EAB and was assured that the organization’s services, particularly the Low Vision, Occupational Therapy, and Orientation and Mobility services, would help Shaan’s development.
Specialists at EAB ran physical and mental tests on Shaan to see which of the organization’s services would be most beneficial for his condition.
“I felt a sense of comfort and condolence,” she said. “An occupational therapist at EAB worked with Shaan through various toys built for children with vision impairments.”
The special toys manipulated the way Shaan incorporates his disability through sound technology.
“Shaan wouldn’t be at the level he is today without EAB’s services,” said Elizabeth. “I am so grateful for the hope that EAB has given my family. EAB educated my son and empowered him to live a happy life.”
Today, Elizabeth shows her gratitude to EAB by serving as the organization’s Board President and by hosting multiple fundraising events throughout the year. She is also a lawyer, a member of several other boards of directors for non-for-profit organizations, and an active member with the Joubert Syndrome and Related Disorders Foundation.