Ehlers-Danlos syndrome, according to Mayo Clinic, is a group of inherited disorders that affects one’s connective tissues, particularly the skin, joints and blood vessel walls. It says those who have Ehlers-Danlos syndrome often have overly flexible joints and stretchy, fragile skin.
Azhane “Ace” McCormick had this rare disease after he was born three months early. After his Minneapolis mom Azhane McCormick gave birth to him in June 2021, she was told that he was given .08% to survive.
He was put in the NICU and doctors also found out that he had the Ehlers Danlos Syndrome. The disease makes Ace’s connective tissues weaker than most, and “he’s prone to bruising and injury,” doctors told KARE News.
After spending 809 days in the hospital, Ace, who is now two years old, finally went home on Wednesday. Children’s Minnesota nurse practitioner Stacy Reller, who was part of the team that took care of Ace, said, “We were worried about him for a long time, and we were afraid this day wouldn’t come.”
“We will walk by this room and see that Ace isn’t here and it’s such a great feeling to think, ‘Oh, that’s been Ace’s room for so long and now he’s home and getting to live his life,’” Reller said. “It just feels like such a win.”
Reller and the team taught Ace’s parents how to provide care for him. McCormick says her little boy is a miracle. “I get to go home and hold my baby, and I even just teared up putting him in a car seat,” McCormick said of Ace, who she describes as her “little loudmouth lion.”
“It’s like a really big learning experience because I never expected this to happen but he’s making it,” Ace’s dad Antwan Askaw said.
Mayo Clinic says there are different types of Ehlers-Danlos syndrome; some are inherited and passed on from parent to child. There is a 50% chance that those who have the most common form — hypermobile Ehlers-Danlos syndrome — will pass on the gene to each of their children.
People who have a personal or family history of Ehlers-Danlos syndrome should speak to a genetic counselor if they have plans to start a family, the center advised.