Doctors work to save 15-month-old battling rare disorder - Western Mass News - WGGB/WSHM

Doctors work to save 15-month-old battling rare disorder

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Doctors at Monroe Carell Jr. Children's Hospital are racing against time to save a 15-month-old Ashland City girl's life.

Alia Jean was born with a rare disorder that attacks her body, causing uncontrollable seizures.

The girl's parents said prayers and hope are getting them through.

"She doesn't follow you with her eyes," said Carman Briscoe, Alia's mother. "She doesn't hold up her head. She doesn't babble like other babies do."

The fact that she's alive at all is a miracle. Alia has spent most of her life in a hospital bed, strapped to tubes, IVs and a heart monitor. Her only nourishment is provided through a port in her stomach.

"It's really hard not knowing what tomorrow is going to bring, or even the next hour," Briscoe said.

Doctors said Alia is a medical mystery. They still don't know what's wrong, only that her health has been failing since she was born.

Her parents said everything was fine until her first check-up when doctors noticed some abnormalities.

"It was one test after another after another, and then everything started coming back," Briscoe said. "We found out she's got brain damage, now we find out she's got seizures. Then they tell us they don't know how long she's got to live, so just be prepared for her leaving any day."

"It would just be nice to know ... what it is that she's going through," said Caleb Plant, Alia's father.

Alia's kidneys are at risk of failing. She also has a collapsed lung.

She's not strong enough for surgery, so a team of doctors and nurses at Monroe Carell Jr. Children's Hospital are scrambling to figure out what's wrong while her parents cherish every moment with her.

"Little things, like if she yawns or she's looking right at us, makes our whole day," Plant said.

"It's hard, I mean, not knowing when you're baby is going to pass away," Briscoe said. "She's a miracle in the making. We still have a long ways to go, but we'll get there."

Doctors are planning to do more genetic testing to determine what's wrong with Alia.

Alia's parents have started a Facebook page called "Fighting for Alia" to share updates on her condition.

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