Meet Zachary S: 2020 Family Advocacy Week Champion

Zachary S and his mother, father, and sibling pose in front of a Christmas tree

Zachary is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Zachary and his family will share information about his health journey, CHOC Children’s role in providing Zachary with necessary healthcare services, and why the public and our elected officials must invest in the future of kids like Zachary.

Zachary was diagnosed with spina bifida in utero at 16 weeks at Rady Children’s Hospital. His has been a complicated, complex spina bifida case.

At just seven years old, Zachary has had over 20 surgeries at multiple hospitals over the years and has seen over a dozen specialists including urology, neurology, neurosurgery, pulmonology, ophthalmology, orthopedics, gastroenterology, pediatric surgery, radiology and plastic surgery. 

He continues to see neurosurgeons and urologists at CHOC Children’s Hospital for his healthcare. In 2019, Zachary needed a full VP shunt replacement. Using cutting-edge technology and equipment, clinicians at CHOC were able to alleviate the pressure on Zachary’s brain by replacing an older shunt with a new programmable shunt. They also replaced an older value with a newer one that will help prevent shunt failure in the future.

Currently, Zach is doing well on his journey and is thriving academically and socially. He likes to hang out with his family, his twin sister Lily and his service dog, Tiki. He enjoys playing video games with his friends and loves adaptive sled hockey and basketball. Zachary wants to be a radiologist one day and has an interest in the human body and bones.

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