Actor Nicolas Cage was so disturbed by the lack of funding to find a cure for the rare brain cancer that killed Sophia Ann Myers that he's taking action.
On Thursday, Sophia's parents, Josh Myers and Angel Myers McIlrath, announced the formation of the SoSo Strong Pediatric Brain Tumor Foundation Inc. in honor of Sophia's battle with the rare and incurable cancer called diffuse intrinsic pontine glioma.
The announcement at the Little Children's Park included news that Cage had made a $10,000 donation to the nonprofit organization in honor of Sophia and to help find a cure for the deadly disease.
Sophia, 7, died nearly eight months after her diagnosis with the deadly disease that quickly strips away a child's ability to walk, talk, swallow, see or hear.
Her parents are now asking for volunteers and donations to the foundation to raise DIPG awareness, find a cause and cure for the disease, fund childhood brain cancer research and to provide services to patients and their families.
"I helplessly sat by, laid next to, and held Sophia for almost eight months while DIPG stole her life," she said. "The disease has stolen so much from us and I refuse to remain helpless. Her life matters. All these children's lives matter. We have to do something and the SoSo Strong PBTF will make a difference in the fight against these brain cancers."
Pediatric brain cancer is the leading cause of death in children.
In addition to Sophia, two other Ocean Springs children, Sophia Mohler, 8, and Jaxon Schoenberger, 6, died of DIPG in the last eight years.
Yet, only 300-400 children are stricken with the disease each year nationwide.
The Sun Herald series Diagnosis: Death documented the journeys of those three DIPG victims and confirmed the number of DIPG cases in the Ocean Springs are elevated.
The state Department of Health and the state Department of Environmental Quality are investigating to determine what may be to blame for the growing number of DIPG cases.
Thursday's celebration took place at the Little Children's Park, one of Sophia Myers' favorite places to spend time with her family and friends.
The event included a glow party, food and fun for all ages and the chance to register as a volunteer for the foundation and make donations.
The ceremony included the unveiling of the SSSF logo of a DIPG tumor in a brain with the outline of Sophia's silhouette — all in her favorite colors — pink and blue.
The announcement came on DIPG Awareness Day, a day set aside in honor of children who've battled the disease.