Local girl dies from rare disease

Sarah Hayner

Associate Producer

Daniella Levya’s family described her as a “loving and happy girl.”

Daniella Levya was described by her mother as a “loving and happy girl.”
Photo courtesy of Dorothy Portillo.

“We have videos of her giggling and messing with her sisters. We could tell when she was happy,” said Dorothy Portillo, Levya’s mother. “She was always happy, always with a smile, always giggling, always no matter what. She was always in a good mood.”

Levya passed away on June 11, 2019 from Mucopolysaccharidosis type IIIA. According to RareDiseases.gov, MPS IIIA is a severe, progressive disorder that affects the central nervous system.

“We found out when she was five, because the disease is not detected at birth,” Portillo explained.

Her symptoms began in her early childhood. For Levya, these symptoms included progressive dementia, hyperactivity, and a regression in brain activity.

“It’s a lack of enzymes in the body,” said Portillo. “She did everything like a normal kid, she walked, but just couldn’t talk.”

There is currently no treatment or cure for MPS IIIA.

“My son was very alert, he walked at 10 months, he did so much before a year. So, when Daniella was going to turn a year old, she didn’t walk, she didn’t want to get potty trained, didn’t talk. I knew something was wrong,” said Portillo.

Portillo and her family had lived in Marfa, Texas, eight hours away from Cook Children’s Medical Center in Fort Worth, Texas. After spending two years driving back and forth, twice a month, they decided to move here eight years ago, so that they could be closer to the hospital.

 “She had 17 to 18 different doctors at Cooks,” said Portillo. “We found a genetic specialist, Alice Basinger, and she was wonderful, wonderful, wonderful.”

Daniella Levya and her family and friends wore purple to raise awareness for the disease.
Photo courtesy of Dorothy Portillo.

Dorothy also has three other children, a 21 year old son and two daughters, 11 and 7 years old.  

“He (her son) helped me 24/7, he was my rock… Financial and just with everything. I couldn’t go to work because Daniella’s would lose her benefits. If she had any other income coming in, she would lose her benefits and social security,” said Portillo.

Levya was one in 100,000 births to be affected, and she lived a “blessed fourteen years,” with her family and friends.

Levya was surrounded by support from her family and friends.
Photo courtesy of Dorothy Portillo.

Portillo dedicated her life to caring for Levya and says she lived a “blessed fourteen years” with her family and friends.

“Our lives are going to be different now,” Portillo said.

In support of Levya, family and friends wear the color purple to spread awareness of the rare disease.  

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