Cyara's Heart

Williams syndrome (WS) is a genetic condition present at birth and can affect anyone, 1 in 10,000 approximately. Medical problems, including cardiovascular disease, developmental delays, and learning challenges, characterize it. These often occur side by side with striking verbal abilities, highly social personalities, and an affinity for music. WS occurs equally in males and females and all cultures worldwide.

Williams syndrome is caused by the spontaneous deletion of 26-28 genes on chromosome #7 at conception. The deletion can occur in either the egg or the sperm. In most families, the child with Williams syndrome is likely the only one with the elastin gene condition in his or her entire extended family.

Cyara Jones is an 11month old diagnosed with Williams Syndrome in September 2022 at two months of age. Since her diagnosis, Cyara has a team of specialists overseeing her medical issues. Along with Williams Syndrome, Cyara has left ventricular dysfunction, congenital atresia of the left main coronary artery, pulmonary artery stenosis, ventricular septal defect, hemangioma, supravalvar aortic stenosis, chronic combined systolic and disastolic heart failure.

According to a Williams social media group, Cyara may be Louisiana's only Williams Syndrome patient.

Cyara was admitted to Ochsner for Children Hospital in New Orleans on May 31, 2023, for complications of congenital atresia of the left main coronary artery and secondary ischemic cardiomyopathy. While Cyara is hospitalized, the team has started an evaluation for possible heart transplantation. Cyara's medical status has changed during this hospitalization, and she has been started on new medications for her heart disease. Cyara may have to travel to another state to receive the care she needs. The family has set up a GoFundMe account to assist with medical bills, travel, future medical equipment, etc.

Any assistance you can give Cyara and her family would be greatly appreciated.

Please contact (225) [phone redacted] if you require additional information.

May GOD bless.