Western NY WALK to End Hydrocephalus

Team Josiah

 

Josiah is a happy determined 7 year old boy, who although has had 6 surgeries since birth doesn’t let that slow him down. He had his first shunt revision in March 2022, and his latest revision surgery in September 2023. Josiah has had shunt taps along with countless CT scans and MRIs to check that the shunt is working properly.  He was born with a rare neural tube defect that was at the back of his head and was not excepted to survive through pregnancy. Josiah is nothing short of a miracle, he is currently walking  independently without the need of braces or a gait trainer. Hydrocephalus has caused poor coordination and balance issues for Josiah, making it hard for him to do simple everyday movements and tasks. He is delayed in his speech, fine and gross motor skills and will never have full range of motion in his neck. He receives PT,OT, speech and vision therapy at his local school. Hydrocephalus along with his birth defect is the main reason for his delays. Josiah has had eye surgery on both of his eyes and had a seizure due to Hydrocephalus.  Consider joining our team to help bring awareness or please consider donating to Team Josiah. Any amount donated goes to finding a cure for hydrocephalus and a better, improved shunt. A shunt that can need countless surgeries throughout life to fix , when it malfunctions. A shunt can malfunction due to infection, become clogged, broken or disconnected. This is why WE WALK! Thank you for taking the time to read this and for showing support to our family!

Hydrocephalus is a life threatening condition with no cure. 

A simple cold or fever can minic the signs of a shunt failure, resulting in countless ER visits to make sure the shunt is still working. 

 

As Josiahs neurosurgeon put it “A shunt can last 2 hours or 20 years in a person there’s no way to know how long they will last for each individual person”

 

 

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