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Girl, 4, to meet Disney ‘princess’

January 10, 2019

When you wish upon a star, the kindness of strangers can be key.

Take, for example, the parents of 4-year-old Emma Gonzalez of Deer Park, who is being feted this month with a weeklong trip to Disney World because of her life-threatening condition, Dravet syndrome, a form of epilepsy.

Her wish, to meet Princess Elena of the enchanted kingdom of Avalor is being funded by contributions to nonprofit Make-A-Wish Foundation.

“Make-A-Wish transforms the lives of children, their families, volunteers, supporters, medical professionals and entire communities,” said Teresa Andrepont, president and CEO of Make-A-Wish Texas Gulf Coast & Louisiana, which is based in Stafford.

Emma’s mother, Sarah Delgado, and father, Hector Gonzalez, were stunned when their daughter began suffering seizures when she was 5 months old.

“She was developmentally on track. She was in day care. We didn’t suspect anything,” Delgado said.

Once Emma’s seizures started, they grew worse.

“She got so sick, a prolonged seizure would compromise her airway, and she would be in (a hospital intensive care unit) for two weeks,” Delgado said.

“It was terrifying. To see your infant turn blue; we were a ball of emotion,” added Delgado, who quit her job as a health professional to stay at home and care for her daughter.

Specialists at Texas Children’s Hospital in Houston diagnosed Emma with Dravet syndrome, which can be treated with cannabis oil in an oral solution called Epidiolex. However, it took about two years for Emma to gain a spot in a research study in October 2017. In June, Epidiolex won approval from the U.S. Food and Drug Administration.

“It has been a lifesaver,” Delgado said.

Emma “has basically been seizure-free” since taking the medication, her mother said.

“She finally caught a break.”

In addition, Emma’s health has improved to the point that she should be able to enjoy a vacation to Disney World in Orlando, Fla.

Delgado, 28, who graduated from Pasadena Memorial High School, said a childhood friend advised her that Make-A-Wish fulfills the dreams of children with critical illnesses.

Once Make-A-Wish has been contacted, a medical release form is sent to the child’s primary physician. Upon medical approval, a volunteer team sets up a time to visit with the child to learn the youngster’s one true wish, Andrepont said. The wish team makes necessary arrangements, with the average wish costing about $9,700.

“Emma is at the age that she loves princesses,” Delgado said.

So, the decision was made for the family to meet Elena, a Latina princess, at Fairytale Hall within Disney’s Magic Kingdom park, said Nikki Eliason, director of development at the Make-A-Wish Stafford office.

Said Andrepont,“The goal is to provide a joyful and meaningful experience that gives the immediate family time together away from medical treatments and medical bills.”

“Emma is precious,” she added.

Make-A-Wish Texas Gulf Coast and Louisiana is one of 60 chapters throughout the United States and its territories. Since the chapter’s inception in 1984, it has granted more than 8,200 wishes, Andrepont said.

For further information about Make-A-Wish and how to help the organization, visit www.texgulf.wish.org.

Don Maines is a freelance writer who can be reached at donmaines@att.net

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