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Three-year-old fights for her life battling rare form of brain cancer

Ella San Miguel, with parents.
Ella San Miguel, with parents.(Amy San Miguel)
Updated: Feb. 27, 2020 at 6:01 PM CST
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METAIRIE, La. (WVUE) - A Metairie toddler fights for her life after she was suddenly diagnosed with a rare form of brain cancer.

Three-year-old Ella San Miguel and her older sister are best friends.

"They're very very close. You know, she's three and she's four, so they're thick as thieves," her mother, Amy San Miguel said.

Their lives changed suddenly after a Christmas cruise.

"It came into the second week of being home, and she was still wobbly, and we noticed that she had some drooling problems, but we thought she was just being a toddler. Brought her into the pediatrician, and by the time we got there, had noticed she had face paralysis on her left side," San Miguel said.

San Miguel said Ella's condition started rapidly deteorating.

“She couldn’t sit up, she was falling over on her face, she couldn’t catch herself, just real fast. very very fast,” San Miguel said.

Ella was diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG, for short.

“It’s a rare type of brain tumor. It’s usually seen in infants. Infant up to 11, 12-years-old, although it can occur in older adults,” LSU Health Neuro-Oncologist, Aaron Mammoser said.

According to the National Institutes of Health, it's a rare form of aggressive cancer, found in only about 300 children in the U.S. every year.

"When you think of different types of brain tumors, usually, one of the mainstays of treatment is surgery. For this, this is a tumor that emanates from the pons, which is part of the brain stem, and so it's surgically inaccessible," Mammoser said.

He said the treatment hasn't changed in the past 40 years, and survival time is usually about a year.

"Because of the location and the fact that it's so surgically inaccessible, we don't know a lot about it," Mammoser said.

San Miguel said she brought Ella to a hospital in Florida with a clinical trial geared towards treating DIPG.

“These trials wouldn’t be out there if there wasn’t a grain of hope, and we don’t want to give up on her. She’s three-years-old and we’re not ready to give up,” San Miguel said.

"She's our love. We can't imagine life without her. She has a whole family that just absolutely adores her," Joni Rowley, Ella's aunt said.

They said it's been difficult explaining her sickness to her siblings.

“The four year old didn’t want to touch her, didn’t want to play with her. She was scared. We just had to explain to her, it’s ok, just have to be a little more gentle,” San Miguel said.

Rowley moved from Utah to help out.

"When this happened, that was it. I pulled the plug on everything I was doing, and I came down here," Rowley said.

San Miguel said she wants more people to know to about this cancer, so hopefully, there will be a cure in the future.

“We want people to realize this is out there. We’re just not going to stop, we’re not going to stop,” San Miguel said.

"It could happen to anyone," Rowley said.

San Miguel said they’ve been to Florida twice, where they’re developing a vaccine made from her white blood cells to attack the tumor.

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