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Girl with rare disease overcomes the odds to celebrate her birthday. Mom says she is a big fighter

"When I see my daughter, she's giving me assurance to stay positive, stay strong, because she is a big fighter."

Girl with rare disease overcomes the odds to celebrate her birthday. Mom says she is a big fighter
Cover Image Source: Instagram / Good Morning America

When 5-year-old 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, a rare disorder, and congenital central hypoventilation syndrome (CCHS), a rare disease. Now, on her milestone birthday, her family is currently seeking money so she can get surgery that will change her life. The news that Alice needed an emergency C-section 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.

"They took her right away to the NICU and then they intubated her right away," Aoudia told "Good Morning America."

"They tried a lot of things but they told me that Alice cannot survive," she recounted, adding that physicians had informed her Alice would never be able to talk, walk, or hear and would be  "handicapped one hundred percent." According to the National Institutes of Health, CCHS is caused by a genetic defect that affects the neurological system and can induce respiratory dysfunction. It affects less than 5,000 persons in the United States, and there is presently no treatment.CCHS can also induce Hirschsprung disease, which the NIH defines as a birth condition in which nerve cells in the large intestine are absent, resulting in intestinal blockage.



 

Alice's mom said that she was treated with several operations and therapies in three separate Chicago hospitals, including La Rabida Children's Hospital, for the first two years of her life before being discharged. Olivia Hayes, a certified nurse at La Rabida, was one of several who assisted in her treatment. "The biggest issue with CCHS and what [Alice] requires is the ventilation," said Hayes. "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."



 

 

Alice now uses a tracheostomy tube to link her trachea and lungs to a ventilator, which helps her breathe. Aoudia and Abbas must care for Alice full-time, pushing her ventilator for her unless she is at school, where a nurse will accompany her 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 had her fifth birthday two weeks ago, as a "wild child" who is "full of life all the time." Aoudia aims to gather enough money for another operation for Alice that isn't covered by insurance through their fundraising. As per Aoudia, the procedure would implant a diaphragmatic pacemaker so Alice may enjoy a life free of cords 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." Despite the difficulties Alice and her family have faced, she remains "the happiest mom in the world," said Aoudia. "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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