Condition: PANS, Pediatric acute-onset neuropsychiatric syndrome; Phelan-McDermid Syndrome
City, State: Redmond, OR
Club: Pilot Butte Middle School Sparrow Club Service Hours:
Date Adopted: 1/29/2020
Talon's Story:• Talon is 7 years old. He was a healthy baby at birth and met all his milestones up until 16 months.
• At that point Talon became very sick. He wasn’t responding to his parents. Doctors ran tests and scans to determine what was wrong. He had a massive ear infection resulting in him getting tubes in his ears.
• At 24 months Talon still wasn’t responding and was diagnosed with moderate to severe autism. Talon was non-verbal until age 3, when his parents discovered he could talk in a limited way with an AAC device.
• Augmentative and Alternative Communication (AAC) devices, are equipment people use to communicate without using verbal speech.
• At age 4 Talon was diagnosed with an autoimmune disorder called PANS, Pediatric acute-onset neuropsychiatric syndrome.
• PANS is characterized by the sudden onset of obsessive-compulsive symptoms and/or severe eating restrictions, along with at least two other cognitive, behavioral, or neurological symptoms (also with sudden onset).
• At age 5 Talon was diagnosed with a rare genetic disorder called Phelan-McDermid Syndrome. This is characterized by global developmental delay, absent to severely delayed speech, and normal to accelerated growth.
• Talon can’t feed himself, because of choking dangers. He has no fine motor skills and will need supervised care his entire life.
• Talon is typically a happy and energetic little boy. He is loving and sweet. He does well at elementary school where he enjoys (and needs) structure.
• Talons loves music and car rides. He also loves being outside and has enjoyed Mt. Bachelor with the help of Oregon Adaptive Sports.
• Talon will be adopted as a Sparrow to Pilot Butte Middle School. Students will have the opportunity to work hard to raise money for Talon’s ongoing treatment through sponsored community service.
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