Memorial set for Pointe Coupee toddler who died of rare condition

VENTRESS — Saturday, June 24th, 2023 was supposed to be a joyous occasion for the Jones family in Pointe Coupee Parish, but instead, the family is mourning a beloved toddler’s death.

Cyara Jones was supposed to turn one year old on Saturday, but her life was cut short because of a congenital heart disease related to Williams Syndrome.

The toddler died on June 20, days before her first birthday.

According to the Cleveland Clinic, Williams Syndrome, also known as Williams-Beuren syndrome, is a rare, neurodevelopmental genetic condition characterized by many symptoms, including unique physical features, delayed development, cognitive challenges, and cardiovascular abnormalities.

Williams syndrome usually occurs when someone is missing a small piece of chromosome 7. This means most people with Williams Syndrome have not inherited the condition from a parent. People with Williams Syndrome have a 50 percent chance of passing the condition on to their children.

According to the Cleveland Clinic, the condition occurs in an estimated 1 in every 10,000 births in the United States.

“She was admitted into Oschner in New Orleans in September, and they found that she had a congenital heart disease related to Williams Syndrome,” said Cecilia Jones, Cyara’s mother. “Many doctors weren’t aware of Williams Syndrome. They had her on a type of medication until they could see if she had a possible heart surgery that could be performed or needed a heart transplant.”

Cecilia said her daughter was re-admitted to Oschner’s Children’s Hospital in New Orleans in May because her heart condition worsened.

“That’s when they learned that Williams Syndrome patients aren’t great for a successful heart transplant patient,” Cecilia recalled. “It was a 50/50 chance for her. They couldn’t do the surgery or the transplant in New Orleans as a risk. It was going to come down to either Texas or Boston to have a possible surgery or transplant that was done.”

Cecilia said her daughter passed away before that decision was made. Cyara was the youngest of four kids and the only one with medical issues.

“It’s been really hard. She was the life of the family,” Cecilia said. “She is really missed. This process has been hard and rough. It was rough to see her go through all the bloodwork she had to do, the CT scans, catheter procedures, MRIs, X-rays, and echograms. When she was first released from the hospital in September, we had to drive to New Orleans once a week for her to get echograms and EKGs.”

A memorial will be held June 30th for Cyara. A gofundme page is set up to help the Jones family with Cyara’s medical expenses.

“When she passed, the PICU unit she was on, there wasn’t a dry eye,” Cecilia said. “From nurses, doctors to the janitors, there wasn’t a dry eye in that building. Everyone got attached to her. She was that type of person. She was a joyful baby.”

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