A 5-year-old girl from Chicago beat the odds to celebrate her 5th birthday. Now her family is raising funds for her to undergo her life-changing surgery.
When Alice Crow was born on November 22, 2017, she was unable to breathe on her own, after which doctors diagnosed her with a rare condition called congenital central hypoventilation syndrome (CCHS) and Hirschsprung’s disease. Diagnosed with another condition called.
Alice’s parents, Sabiha Audiia and Atmane Abbas, are from Algeria and were on vacation in America when Audiia had to undergo an emergency caesarean section, so it was a big shock.
“They took her to the NICU right away and intubated her right away,” Aoudia told Good Morning America.
Alice with congenital central hypoventilation syndrome requires 24/7 use of a ventilator to help her breathe.
Courtesy Sabiha Audiia
“They tried many things, but they said Alice couldn’t live,” she recalled, adding that doctors told Alice she couldn’t speak, walk, or hear, and that she was “100% disabled.” He added that he had told her that it would be.
According to the National Institutes of Health, CCHS is caused by genetic abnormalities that affect the nervous system and can cause breathing problems. He affects fewer than 5,000 people in the United States, and there is currently no cure for this syndrome. CCHS can also cause Hirschsprung’s disease. The NIH defines it as a birth defect in which nerve cells are lost from the colon, causing intestinal obstruction.
During her first two years of life, Alice underwent multiple surgeries and treatments at three different hospitals in Chicago, including La Rabida Children’s Hospital, before being discharged, according to her mother.Olivia, a registered nurse at La Rabida Hayes was one of many who helped care for her.
“The biggest problem with CCHS and what [Alice] What you need is ventilation,” says Hayes, “GMA. When she forgets to exhale, it builds up inside her.”
Today, Alice relies on a tracheostomy tube that connects her windpipe and lungs to a ventilator to help her breathe. Aoudia and Abbas have to take care of her Alice full-time, helping push the ventilator unless a nurse is at school chasing her Alice’s vents.
“She’s strong,” said Audiia. “Sometimes when she’s fine at her house, I look at her like you, like she’s not sick. [a] normal baby. ”
Hayes also described Alice, who two weeks ago had a special fifth birthday party to celebrate, as a “wild child” who was “always full of energy”.
According to Aoudia, her daughter Alice is a “strong” and “smart” child who understands five languages.
Courtesy Sabiha Audiia
Alice celebrated her fifth birthday in late December.
Courtesy Sabiha Audiia
Aoudia hopes the fundraiser will raise enough money for another uninsured surgery for Alice. Aoudia said the surgery will implant a diaphragmatic pacemaker, allowing him to live without cords and ventilators.
“This pacemaker is embedded in her diaphragm and tells her brain to breathe. [on] Her own,” explained Audia. [have] With a small battery in her backpack and free from vents and cords, she can walk, run around, and go to school without a problem. ”
Alice and her family have had to endure many hardships, but Alice still feels “the happiest mom in the world.”
Sabiha Audia and daughter Alice Chloe.
Courtesy Sabiha Audiia
“I’m really, really happy and proud of her,” she added. Because she’s a great fighter.”
