Alice Cloe was born with congenital central hypoventilation syndrome, and doctors told her mother, Sabiha Aoudia, that she would not survive past one year old.
When she was born, she couldn’t breathe on her own, so they took her to the NICU right away to intubate her. That’s when Aoudia would first learn of Cloe’s diagnosis.
Despite the hand she’s been dealt, she defied all odds and just celebrated her fifth birthday this past November!
Congenital central hypoventilation syndrome is a rare disorder of the autonomic nervous system that affects breathing. Infants with this condition may hypoventilate when falling asleep and have a bluish tint to their skin or lips. With this condition also comes difficulty regulating heart rate and blood pressure, decreased perception of pain, low body temperature, learning difficulties, among many other symptoms.
Because this disorder affects breathing, Cloe has had multiple surgeries and has had to spend her whole life on a ventilator, but this hasn’t stopped her from living her life.
She is now eligible for a diaphramatic pacemaker, which would give her a chance of life off a ventilator for the first time.
The pacemaker will be implanted inside of her diaphragm, which will then give the order to her brain to breathe on her own.
If it’s a success, Cloe would no longer have to carry around her ventilator or be slowed down by the cords. She will be able to go to school, walk and run around like all of the other kids.
Cloe’s mom says looking at her daughter reassures her to be positive because she has remained strong herself and is a big fighter.
Hear more of her inspiring story in the video below: