When looking quickly at 13-year-old Christian Tremaine, one would see a happy, energetic teenager. When you look a little closer and see the scars and stitch marks on his head, a different story is being told. When looking quickly at
When looking quickly at 13-year-old Christian Tremaine, one would see a happy, energetic teenager. When you look a little closer and see the scars and stitch marks on his head, a different story is being told.
Christian suffers from an incurable brain condition called hydrocephalus, and the scars and stitch marks are the result of the numerous brain surgeries to repair and replace the device in his brain, known as a shunt, that keeps him alive.
Occurring in approximately one of every 500 births and in over one million Americans today, hydrocephalus is a condition in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. Because of lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives.
Untreated, hydrocephalus could be fatal.
Because of her nephew, Shaula Tualaulelei wanted to get more involved in helping to raise awareness and raising money to fund research projects in this rarely talked about and neglected brain condition. When she saw that Amanda Klebe had been recently named as Hawaii State Chapter director with the Pediatric Hydrocephalus Foundation, she reached out and asked about sharing that responsibility.
“My nephew, Christian, has been labeled a miracle child since his birth in 1999 and continues to amaze us as he battles with hydrocephalus. He has endured many brain surgeries, and it is because of his strength, I feel committed to make a difference. It is my mission to help raise awareness, provide support for families and help “Fund a Cure” here in Hawaii. I am really excited to be apart of the PHF Ohana,” said Tualaulelei.
The Pediatric Hydrocephalus Foundation, an all-volunteer nonprofit 501(c)3 charitable organization, educates the community by raising the level of awareness about hydrocephalus and provides support to families, friends and children affected by this brain condition.
The PHF also raises money for and works with the medical community in searching for a cure and additional treatment options for those with hydrocephalus. Additionally, the PHF advocates on behalf of the members of the hydrocephalus community and works with policy makers at the state and federal levels to raise awareness and push for more research and support in the fight against hydrocephalus. All donations are tax-deductible.
Since December 2010, the PHF has awarded $70,000 in grants and donations to hospitals, neuroscience institutes and medical research centers for hydrocephalus research and education. For more information, visit www.hydrocephaluskids.org.
