CHARLOTTE, N.C. (WBTV) - Kindergartner Alina Sossamon in Cornelius is “one-of-a-kind.”
“Only the world doesn’t really know it,” said mom Stephanie. “They don’t know her as I do. I want to shout her out because I am very, very proud to be Alina’s mom.”
Alina has a rare chromosomal abnormality.
It’s so rare, no one else in the world is on record as having the same genetic translocation. (She’s truly “one-of-a-kind.”)
A piece of Alina’s 9th chromosome detached, then reattached to her 7th chromosome.
“I had a beautiful pregnancy,” Stephanie said. “We found out that something was wrong as soon as Alina was born. She was whisked to NICU within minutes of birth. My husband, Lee, and I quickly got a crash course in medical terminology.”
Since then, Alina has faced many trials, some leaving Stephanie and Lee uncertain if she’d pull through.
Alina doesn’t have the ability to walk, crawl, or even speak, but communicates a lot through her expressions.
Her mom says she’s authentic and clear in her facial communication, can light up a room, and at 6-years old, is doing her best to thrive.
The biggest current problem for Alina is seizures. A year ago, she was having hundreds a day.
Though that number has reduced, she still has more than any one person should.
They—obviously—impact daily life. Alina is going through a process to see if she’s a candidate for a type of brain surgery called corpus callosotomy.
The surgery has the potential to calm Alina’s brain so seizure medicines can work.
“I describe it as there are seizure fireworks going off in her brain,” Stephanie said. “The medicine chases the fireworks to stop them. Which, of course, isn’t possible: No one can stop fast-moving fireworks. But if she does get this surgery, there’s a chance it’ll effectively calm the fireworks so the medicine has a chance.”
Alina goes to Rocky River Elementary School in Mooresville.
Her mom works at that same school as her art teacher, and her older brother and sister—Maya and Levi—are 11-year-olds in the same hallways.
“Alina, as a person, she is the strongest individual I know,” her mom said. “Even though she can’t do what everyone else can, she is an inspiration. I am so thankful God gave her to us. We live full, active lives with our three kids, and try to go to take family adventures when we can.”
Stephanie said there are times the world seems to come crashing to a halt due to medical emergencies, but they constantly spend family time together to make the best of the situation.
“I hope Alina’s unique situation can be shared so others can learn about how rare disease is all around us, and kids who seem like they’re living different lives, still put out precious light.”
Happy to share, Stephanie. Thank you for sharing your daughter with all of us.
PS: Stephanie also wanted to mention the staff at Jeff Gordon Children’s Hospital. She calls them, “a second family” and says they’ve helped Alina more than could ever be described.