“Full of Life” Girl With Rare Disease Since Birth Celebrates Fifth Birthday Beating the Odds | “She Is a Big Fighter”

When Alice Cloe was born on November 22, 2017, she was unable to breathe on her own. Later, physicians discovered that she also had Hirschsprung disease and a rare disorder known as congenital central hypoventilation syndrome (CCHS). The news that Alice needed an emergency surgery came as a huge shock to her parents, Sabiha Aoudia and Atmane Abbas, who are both from Algeria and were vacationing in the United States, per ABC.

"They took her right away to the NICU and then they intubated her right away," said Aoudia. "They tried a lot of things but they told me that Alice cannot survive," she recalled, adding that doctors told her that Alice would never be able to talk, walk, or hear and would be "handicapped one hundred percent."

For the first two years of her life, Alice was treated with several operations and therapies at three separate hospitals in Chicago, according to her mother, including at La Rabida Children's Hospital. One of the many people who assisted in providing for her was registered nurse Olivia Hayes from La Rabida. "The biggest issue with CCHS and what [Alice] requires is the ventilation," Hayes told Good Morning America. "She just couldn't maintain and she really still can't maintain that breathing on her own to get the carbon dioxide out. It kind of builds up within her if she forgets to breathe it out."

To the joy of her parents, Alice just celebrated her fifth birthday after overcoming all odds. Her family is currently seeking money so she can get a procedure that will change her life. "She's strong," Aoudia said. "Sometimes, when she's healthy at home, like she's not sick, I'm looking at her like you're [a] normal baby."

Today, Alice is dependent on a ventilator, which is connected to her trachea and lungs via a tracheostomy tube. Unless Alice is at school, where a nurse will accompany Alice with her vent, Aoudia and Abbas must provide full-time care for Alice, including helping to push her ventilator for her. Hayes called Alice a "wild child" who is "full of life all the time," and she received a spectacular fifth birthday party celebration two weeks ago.

Aoudia aims to gather enough money through fundraising to pay for Alice's additional, uninsured operation. According to Aoudia, the procedure would implant a diaphragmatic pacemaker to provide Alice the option to live a life free of wires and a ventilator. "This pacemaker will be implanted inside of her diaphragm and then give the order for the brain to breathe [on] her own," Aoudia explained. "She will [have] the small battery in her backpack and then be free from the vent, from the cord and then she will walk and then run around and then go to school without any issue."

Alice still feels like "the happiest parent in the world," according to Aoudia, despite all the difficulties she and her family have faced. "I'm really, really happy and proud of her," she added. "When I see my daughter, she's giving me assurance to stay positive, stay strong, because she is a big fighter."

References:

https://abcnews.go.com/GMA/Family/girl-beats-odds-celebrate-5th-birthday/story?id=96200418

Cover Image Source: YouTube | Good Morning America