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PHF Featured Story- PHF GA 1st Annual Hydrocephalus Awareness WALK & Family Fun Day
September 28, 2011 by PHF
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LOCAL PROFILE: Sawanda Spinks, President of Georgia Pediatric Hydrocephalus Foundation
Read the full story by Eden Godbe: ATLANTA – Sawanda Spinks was eight-months-pregnant when she learned her first child would be born with hydrocephalus.
“I had never heard of it; I didn’t know what it was but when I heard the risks, I started crying; I couldn’t take listening to that”, she said.
Spinks had gone into the emergency room for a pulled muscle but when she left her life was changed, forever.
Hydrocephalus is a condition that affects 1-in-500 infants. The condition, also known as having “water on the brain”, happens when fluid accumulates on the brain and in the skull cavities.
As any first-time parent would Spinks visited countless specialists, searching for good news, before she would give birth to her son a month later; she heard none.
“Doctors didn’t give us much hope but they were doing their job, they’re supposed to tell you the worst case scenario”.
PHF Featured Story
August 8, 2011 by PHF
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PHF Colorado State Director Ashley Fallis, her husband Thomas, and their son Blake, were featured in the Greeley Tribune.
Read the full story by Chris Casey: Blake Fallis appears to be a normal 3-year-old boy. He’s rambunctious. He asks his parents for their cellphone so he can play with the keypad. He likes to ride his tricycle.
But he has a curious-looking lump that curls from the top of his scalp down the side of his mohawk-shorn head and disappears at the base of his skull.
Little does the observer know, the scarlike lump is a shunt and tube running from the crown of his skull down to his abdomen, where it allows cerebrospinal fluid to drain and be reabsorbed into the body.
Up until two years ago, Ashley and Tom Fallis of Evans didn’t worry about Blake’s brain. He seemed to be a perfectly normal toddler — albeit one with a large head.
“We just thought he had a big head — that he took after his dad,” Ashley says with a chuckle.
But all that changed a couple of days after Thanksgiving 2009 when Blake tugged on a thread of beads that strung together a row of fireplace stockings, and their heavy holders, pulling one of the holders down onto his head.
After taking him to an urgent care clinic in west Greeley and not getting a CAT scan — a physician assistant said a scan was probably unavailable that day — they took him to North Colorado Medical Center the next day. Ashley worked in the intensive care unit at NCMC at the time, and Tom called to tell her the scan found no bleeding but “moderate hydrocephalus.” Hydrocephalus is known as water on the brain, but it’s actually an inability of cerebrospinal fluid to drain properly.
PHF June Event Recap
June 12, 2011 by PHF
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June has already turned out to be a very busy month for the Pediatric Hydrocephalus Foundation with events taking place all across the Country.
The month started off with Cole Illions, a 6 year old with Hydrocephalus and son of Michael & Kim, the Founding Members of the PHF, Inc., receiving the 2011 Patient Appreciation Award from the Neuroscience Institute @ J.F.K. Medical Center in Edison, New Jersey on June 1st.
On June 2nd, the Nebraska Chapter of the PHF also had an event as the Omaha Storm Chasers, a minor league baseball team, honored the PHF as that night’s Community Organization in front of over 5,500 fans in attendance.
With that honor, the PHF had a vendor table set up throughout the game, an on-field interview and an on-air radio interview with the PHF Nebraska State Chapter Director’s Melissa Yeshnowski & Robbie Dunlop.
Melissa’s 10 year old son Mitchell, who has Hydrocephalus, also got to throw out the first pitch!
The PHF Rhode Island Chapter’s 2md Annual Spaghetti Dinner fundraising event on Saturday June 4th was a well attended successful event, as State Director Rebecca Minasian continues to do her part in raising awareness and money for Hydrocephalus Research on behalf of her daughter Caitlin, and other children with Hydrocephalus in Rhode Island.
PHF New Jersey’s Day at the Races event on Sunday June 5th @ Monmouth Park Race Track was sold out 2 weeks prior to the event. In Oceanport New Jersey, the hometown of the famous race track, Mayor Michael Mahon, along with the Borough Council, previously proclaimed that Sunday June 5th was Hydrocephalus Awareness Day.
The PHF also sponsored the 2nd race of the day and in the Pediatric Hydrocephalus Foundation Challenge, Innisfree, with jockey Elvis Trujillo, crossed the finish line to win the trophy.
