Woodbridge, NJ- When looking at 4-year-old Hailie Mussinan, one would see a happy, smiling, & playful little girl who loves to dance. When you look a little closer and see the scars and stitch marks on her head, a different story is being told.
Hailie suffers from an incurable brain condition called Hydrocephalus, and the scars and stitch marks are the result of the multiple brain surgeries to implant the device in her brain, known as a shunt, that keeps her alive.
Occurring in approximately 1 of every 500 births and in over One Million Americans today, (including former Congresswoman Gabrielle Giffords), 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.
Hailie was selected as one of two children to serve as this year's "National Face of Hydrocephalus Awareness", for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States. Hailie, whose family lives in Woodbridge, will represent the girls, while 4-year-old Owen Rush of South Carolina will represent the boys.
Melody Mussinan, Hailie's mom, is ecstatic that her daughter will be the "Face" of Hydrocephalus Awareness for the Hydrocephalus Community in 2014; "Together as a family we are blessed to have found, and be apart of, the Pediatric Hydrocephalus Foundation and Hailie is honored to represent all the girls with Hydrocephalus in 2014!"
Hailie will be featured in advertisement campaigns & promotional materials for Hydrocephalus Awareness as we head towards the 6th Annual "National Hydrocephalus Awareness Month" in September. Hailie and her family will also be traveling to Washington, DC for ‘National Hydrocephalus Awareness Day on Capitol Hill’ on Friday August 22nd.
The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 34 state chapters, provides support to families, friends and children affected by this incurable brain condition.
PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF advocates on behalf of members while working with policy makers at State and Federal levels to push for more research and support in the fight against Hydrocephalus. Donations are tax-deductible.
Since 2010, PHF awarded $225,000 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for research and education. For information, visit HydrocephalusKids.org.