CHARLOTTE, NC (WBTV) - "Super" Lee Ciciarelli would be seven years old today.
In honor of his birthday, his former preschool - Myers Park Baptist Through-the-Week School and The Cornwell Center – is hosting its second annual "Super Hero Day".
All 3-to-5-year-olds will dress up as their favorite super hero. Stories will be read and pizza will be served because even at the age of 4-and-a-half, SuperLee made a big impression on his teachers.
"I'd love if you could feature my Lee," mom Mary Ann Ciciarelli wrote. "He was born Easter Monday in 2010 and weighed 3-pounds 2-ounces. He had webbed fingers between the last three fingers of each hand. They told me it was nothing to worry about. Not once did anyone mention heart issues."
Sadly, a heart issue is what ultimately grounded SuperLee.
It began a year after he was born. Mary Ann took her son to have same-day surgery to separate his pinky and ring fingers. While their doctors consulted with cardiology. Other tests were issued and Sanger Clinic Pediatric Cardiology eventually said they found "LongQT" on his EKG.
"They said it was good they found it early," Mary Ann said.
What they didn't know at the time was that it wasn't just LongQT, but LongQT 8… also known as Timothy Syndrome.
Never heard of it? I hadn't either.
Timothy Syndrome is a multi-organ disorder. It's considered a cardiac condition and is unique because it causes problems with various organs in the body. It's also so new, doctors aren't fully sure how it manifests itself in each organ.
"We were devastated once we realized it was worse than originally believed," Mary Ann said. "We were sent to the Mayo Clinic in Minnesota."
It was here where Mary Ann and her husband Christian heard what no parent should ever hear:
"They told us our son was a ticking time bomb," she said. "They said he needed heart surgery immediately. This shook our world, but we did as we were advised."
Two-and-a-half years later, Lee was beating the odds. He was happy, seemingly healthy and had just become a big brother to his little sister Evelyn Ann. He was about to become the poster child for Timothy Syndrome. All was going so well his parents sent him to kindergarten at Selwyn Elementary School.
On November 18, 2015, Mary Ann was in Florida for work and received a call from the school.
"They said he had a 102-degree fever and was lethargic," she said. "I knew this could mean a hypoglycemic seizure could come on. Christian picked him up from school and gave him a Tylenol and some apple juice. Lee threw it up immediately and started seizing.
An ambulance rushed him to the ER. He woke from the seizure in the ER and screamed that he wanted to go home. Then he seized again. He woke up one more time only to have a seizure that caused his heart to completely stop."
CPR was performed for nine minutes. Doctors brought Lee back to life, but the loss of oxygen had made an impact.
"On November 24th, 2015, we had to make the toughest decision of our lives," Mary Ann said. "My husband and I held him and sang our blessing song to him as we removed the breathing tube. We watched him breathe his last breath."
If you're reading along and need to take a minute, take it. I had to when reading Mary Ann's email.
"I've been wanting to share our story about SuperLee publicly, but haven't been ready yet," Mary Ann continued. "But with the special day from this school and the fact we've now started a non-profit, it seems like a good time. So... I wanted to ask... if my SuperLee could become one of your amazing #MollysKids?"
Yes. Of course.
We tell the uplifting and the heartbreaking. It's all real. SuperLee's story is as real as it gets.
To find out more about the non-profit Mary Ann co-founded called Timothy Syndrome Allianice, go here: www.sads.org/tsa.
And to all those kiddos at Myers Park preschool today not exactly sure why they're dressed as a Superhero, that's okay. You're young. But hopefully your parents can check out the site and send Mary Ann a good thought below. She'll be reading all of them.
*Editor's note: This is about one of #MollysKids, children WBTV Anchor Molly Gr antham follows closely on her Facebook page. It was first
published there – which is why it's written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story (and updates on all #MollysKids) here.