Living With Hydrocephalus: Samantha’s Story
September 22, 2015 by PHF
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In many ways, Samantha Frame is your typical eight-year-old girl in the third grade.
She loves animals, especially her dog, Lola, and white tigers like her stuffed animal Harmu.
She loves Taylor Swift, and you could probably guess her favorite school activity. (Recess!)
But, Samantha is different than many other kids her age.
She lives with Hydrocephalus.
“It’s an extra accumulation of cerebral spinal fluid,” said Randi Conley, Samantha’s mother. “Essentially, it’s a Greek word for ‘water on the brain’ is what it is, and they have too much fluid and not enough space.”
Samantha has undergone nine surgeries since her diagnoses when she was only 10-and-a-half months old.
She also has a shunt installed which drains the excess fluid away from her brain.
Even though she hasn’t had a surgery since January 2014, nearly two years, Samantha deals with many challenges everyday.
“The average child gets the flu. The average child gets strep throat. But, the first symptom of those things are headaches,” Conley said. “So, Samantha, a lot of the symptoms of a regular childhood illness that most people just go ‘hmm…ok,’ those are also symptoms of a shunt failure. So, a lot of times in the fall and in the winter time, she ends up in the emergency room.”
September is Hydrocephalus Awareness Month.
Samantha’s mother, like many other parents who have a child with the rare disease, just want to find a cure.
“My little girl has headaches. She’s had nine brain surgeries. She’s eight-years-old,” Conley said. “That shouldn’t happen. We’ve got to find a way to fix this so that no other mom has to watch her kid do this, and no other child has to go through this. It’s time. We need a cure.”
Conley says her daughter, like many others battling this condition, is a fighter.
Samantha looks up to UFC fighter, Ronda Rousey.
“I love the fact that my little girl has a strong, beautiful, intelligent woman that is not going to take anything from anybody, to look up to,” Conley said. “Some of the things have to be filtered, but overall, she can look at her and she’ll say, ‘I’m going to beat this like Ronda Rousey is.'”
As for Samantha…
5 News Reporter Andrew Havranek: What would you like to say to other kids who might be going through some of the same things you go through on a daily basis?
Samantha: I hope they feel better.
To learn more about hydrocephalus and more on how to donate for a cure, click here.