The Xavier M. Zawaideh Foundation is an IRC 501(c)(3) private foundation dedicated to Xavier, who was born with bilateral Sturge-Weber syndrome. Xavier's journey, like many others suffering from this syndrome, has not been an easy one, but after many surgeries, hospitalizations, continual doctors appointments, and therapies, he is thriving. Sturge-Weber syndrome is a rare, progressive disease characterized by a vascular malformation on the brain, skin and eyes; in some cases it is only on the brain, in others, it is only on the brain and skin. The vascular malformation causes seizures, stroke-like episodes, migraines, glaucoma, thickening and darkening of the skin in areas affected as well as other systemic issues. It is caused by a random, somatic, genetic mutation of the GNAQ gene during pregnancy; therefore, it is not inherited and can not be prevented. The exact incidence and prevalence is unknown, but one estimate places the incidence at 1 in 20,000-50,000 live births. The severity of Sturge-Weber syndrome varies from person to person, and left untreated properly, it can lead to blindness, developmental deterioration, and possible death from the seizures. 

 

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We hope to better educate society on this rare and progressive disease, which can cause social isolation and ridicule from the vascular malformation on the face. We hope to educated the medical field and insurance companies on the importance of properly handling this syndrome. We hope to fundraise to find better treatments and a possible cure. We want to thank Xavier for coming into our lives just how he did strong, amazing, inspirational, determined, stubborn. Without him, we would have never been so touched by an angel, taught the secrets of life, had such clarity in our souls of the real beauty in this world.

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                                                                                                                                                 The Zawaidehs