Condition: Jeavons Syndrome
City, State: Grants Pass, OR
Club: Talent Elementary School Sparrow Club Service Hours:
Date Adopted: 2/04/2022
Robert's Story:Robert, a.k.a “Bob”, is an adventurous 6-year-old boy who is in kindergarten at Riverside Elementary in Grants Pass, OR.
Bob suffers from a condition called, “Jeavons Syndrome,” which is a rare form of epilepsy.
Bob can experience up to 300 seizures a day, and the type of seizures can vary. Even with daily medication, doctors are unable to get the seizures under control.
Bob also has a condition called “Chiari malformation,” which causes him extremely painful headaches.
Bob is scheduled to have a VNS (vagus nerve stimulation) surgery done sometime this year. Surgeons will implant a device near his collarbone and run a wire to the vagus nerve. This device is used to treat seizures when medication is unable to help.
Bob’s condition is a daily challenge and often leaves him feeling exhausted. However, he never lets it keep him down for long. He always finds a way to get back up and enjoy life.
Bob enjoys BMX racing, he is a yellow belt in karate, and he loves his little brother and his pet guinea pig.
Bob and his family have hopes to travel to Boston Children’s Hospital to see a specialist about his condition.
Bob will be adopted as a Sparrow to Talent Elementary School. Talent Elementary Students will work hard to raise money for Bob through sponsored community service.
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