Zeke S.

Condition: Ataxic Cerebral Palsy, Intractable Epilepsy, and Mitochondrial Disease
City, State: Grants Pass, OR
Club: Illinois Valley High School Sparrow Club Service Hours:
Date Adopted: 11/04/2019

Zeke's Story:

• Zeke is a sweet and happy 3-year-old boy who was born with numerous health challenges. Some of these include ataxic cerebral palsy, intractable epilepsy, and mitochondrial disease.

• Mitochondrial disease is different for every individual but the younger a child is when diagnosed, the more severe it tends to be. Zeke’s mitochondria are severely damaged so his cells do not perform the tasks needed to keep all systems healthy. This makes him feel exhausted most of the time.

• Zeke is also hypotonic, which means he has very loose and weak muscles. This affects his fine motor skills and requires extra effort, mentally and physically, to get his body to respond to tasks. Zeke also suffers with seizures, difficulty with walking, hearing loss, and vision problems.

• When Zeke was 9-months-old, he had a G-Tube installed because he was not swallowing properly due to neurological issues. This has allowed Zeke to grow and gain weight, even though mitochondrial disease typically makes weight gain near impossible.

• On May 14, 2019, Zeke had a surgery to implant a Vagus Nerve Stimulator (VNS) with the hope that it might help control his seizures. He was also fitted for hearing aids and glasses.

• Zeke has recently had heart complications and will begin to work with a cardiologist to further investigate possible heart defects.

• Even with all the hard things he goes through medically, Zeke is still joyful. He loves his family and almost always has a smile on his face. He loves the movies “Toy Story” and “How to Train Your Dragon.”

• Zeke will be adopted as a Sparrow to Illinois Valley High School. IVHS students will have the opportunity to work hard to raise money for Zeke’s ongoing treatment through sponsored community service.


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