Girl with rare disease beats the odds to celebrate fifth birthday

(CHICAGO) — A 5-year-old in Chicago has overcome the odds to celebrate her fifth birthday. Now, her family is raising money for her to receive a life-changing surgery.

When Alice Cloe was born on Nov. 22, 2017, she was unable to breathe on her own and later, doctors diagnosed her with a rare disease called congenital central hypoventilation syndrome (CCHS) and another condition called Hirschsprung disease.

It was a big shock for Alice’s parents, Sabiha Aoudia and Atmane Abbas, who are both from Algeria and had been on vacation in the U.S. when Aoudia had to undergo an emergency C-section.

“They took her right away to the NICU and then they intubated her right away,” Aoudia told ABC News’ Good Morning America.

“They tried a lot of things but they told me that Alice cannot survive,” she recalled, adding that doctors had told her Alice would never be able to talk, walk, or hear and would be “handicapped one hundred percent.”

CCHS is caused by a genetic abnormality that affects the nervous system and can cause respiratory impairment, according to the National Institutes of Health. It affects less than 5,000 people in the U.S. and there is currently no cure for the syndrome. CCHS also can cause Hirschsprung disease, which the NIH defines as a birth defect where nerve cells are missing from the large intestines and cause bowel obstruction.

According to her mom, Alice was treated with multiple surgeries and therapies at three different Chicago hospitals for the first two years of her life, including La Rabida Children’s Hospital, before she could be discharged. Olivia Hayes, a registered nurse at La Rabida, was one of the many who helped care for her.

“The biggest issue with CCHS and what [Alice] requires is the ventilation,” Hayes told GMA. “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.”

Today, Alice relies on a tracheostomy tube that connects her trachea and lungs to a ventilator that helps her breathe. Aoudia and Abbas have to care for Alice full-time, helping to push her ventilator for her unless she’s at school where a nurse will follow Alice with her vent.

“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.”

Hayes too, described Alice, who got to have a special fifth birthday party celebration two weeks ago, as a “wild child” who is “full of life all the time.”

With their fundraiser, Aoudia hopes to raise enough money for another surgery for Alice that isn’t covered by insurance. The surgery would implant a diaphramatic pacemaker so Alice can have the chance to live a life untethered by cords and a ventilator, according to Aoudia.

“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.”

Despite all the challenges Alice and their family have had to endure, she still feels like “the happiest mom in the world,” Aoudia said.

“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.”

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