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From Pediatric Hydrocephalus Foundation

CLANTON — As Lillian approaches her seven birthday this summer, she has faced more adversity than some people approaching their 70th Birthday. Lillian was born with Hydrocephalus, an incurable brain condition that is treated only by brain surgery, and Lillian has already survived five brain surgeries to stay alive.

As if having a daughter with an incurable brain condition was not enough to deal with for Lillian’s parents, Lillian’s twin brother James was also born with Hydrocephalus.

Lillian was selected as one of two children to serve as this year’s “National Ambassador of Hydrocephalus Awareness” for the Pediatric Hydrocephalus Foundation to help raise the level of awareness and education about Hydrocephalus in the United States. Lillian, whose family lives in Clanton, Alabama, will represent the girls, while 10-year-old Isaiah Donaldson of Ohio will represent the boys.

Lillian loves reading. She tries reading everything she can, from books to road signs. She is a true Disney fan as well. She also loves watching football with her family and cheering on her favorite team, the Alabama Crimson Tide!

“I am really excited for this! It’s going to be so fun!” Lillian said, after being told by her mom of being selected as the National Ambassador.

She will be featured in advertisement campaigns & promotional materials for Hydrocephalus Awareness ahead of the “National Hydrocephalus Awareness Month” in September.

“We are extremely honored for Lillian to have been chosen as the girl representative 2022 National Ambassador of Hydrocephalus Awareness campaign. Our hope is that we can raise awareness for all those living with Hydrocephalus,” Lillian’s parents Sarah and Jeremie said.

Occurring in approximately 1 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.

The Pediatric Hydrocephalus Foundation, a volunteer driven nonprofit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 25 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. Since 2010, PHF over awarded $650,000 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for research and education. For information, visit HydrocephalusKids.org.