Sabiha gave birth on her babymoon. In another country.

The Algerian French teacher had chosen Chicago for the last vacation she would have with her husband before the pair became first-time parents.

They had no idea their lives were about to change so dramatically.

“If she had been born at home she would have died right away. Being born in USA was a huge gift,” Sabiha says. “She had a chance to survive.”

When she was born in 2017, her daughter Alice was the sixth child in the world, since 1973, to be diagnosed with congenital central hypoventilation syndrome (CCHS).

Doctors told her parents she would never walk, talk or breathe on her own. But her mom says she had faith.

“I just looked into my daughter’s eyes, and I knew she was in there. She gives me life.”

After being transferred around to multiple large medical centers in Chicago, Alice and her family made their way to La Rabida, where Alice lived for nearly a year. Nurses quickly became like family, teaching Alice’s mom to speak English and helping her figure out how to get a driver’s license.

“We left everything,” mom says. “La Rabida was our family.”

At La Rabida, the family learned how to care for their daughter and manage her “blue episodes.” Because of CCHS, her brain doesn’t always tell her lungs to breathe, and it can be terrifying for a parent.

Nurse Olivia Hayes coached Alice’s mom on how to stay calm even when she was scared. “Sometimes TV was the best medicine,” Hayes says. She used to put on an episode of the Smurfs, in French, and Alice would start to breathe calmly again.

“I relied on the nurses,” Sabiha says.

Alice’s ventilator has kept these episodes at bay for over a year now. She runs and plays and dances like any other 5-year-old. Her mom says she dreams of seeing her child without a cord.

How she will fare later in life is uncharted. The condition is very rarely studied, and outcomes vary. Because of her complex medical care, the family has not been able to return to their home country.

For now, Alice is thriving in kindergarten. She understands five languages, knows all her letters and numbers, and pushes around her ventilator on a cart at school.

“She is a miracle,” Sabiha says. “She really is a miracle.”

See how you can help Alice live life off her ventilator.