Kim Levy-Zinn, 41, and her kids have been through a lot. Every diagnosis and challenge has brought them to where they are now, trying to be an example and use their experiences to lift up others.
“It has changed my life and outlook. Things that people would take for granted, I don’t take for granted at all. It makes me so grateful for the little things in life.”
After giving birth to her first child in 2009, Kim didn’t know how to process the doctor’s news. Her son, Connor, was born with a heart defect called Tetralogy of Fallot.
“You just don’t think you’re going to hear something like that,” she recalls. “I just remember going completely numb, and when the doctor was telling me he was going to require open heart surgery, I never felt so devastated in my life at that point.”
Kim’s dad made some calls around Memphis and found a renowned doctor at Le Bonheur Children’s Hospital who they trusted to do Connor’s surgery.
“We actually flew out from California when we were living out there,” Kim says. “We flew out here just for my son to have Dr. Knott-Craig do his open heart surgery.”
Connor’s heart defect required a total repair, and in some cases, multiple surgeries are necessary. At just 10 weeks old, Connor sailed through surgery and hasn’t needed another. He is now an active 11-year-old, who plays soccer and basketball.
Connor’s treatment wouldn’t be the last time Kim and her family would turn to the trusted doctors at Le Bonheur.
Two years later, Kim welcomed a beautiful baby girl with fiery red hair and a personality to match.
“She is pretty much walking sunshine. She is the happiest child,” Kim said about her now 9-year-old daughter, Abigail. “Anytime she walks into the room, you can’t help but notice her. She literally brings joy everywhere.”
That joy and laughter came later. When Abigail was 6 weeks old, Kim noticed she wasn’t holding her head up. She wouldn’t sleep or eat, and she screamed around the clock.
Kim and Abigail saw countless doctors, and it wasn’t until Abigail had a sudden drop seizure in the kitchen that they finally got some answers.
“I rushed her to Le Bonheur’s emergency clinic,” Kim explains. “Blood tests showed that she had Angelman syndrome. I felt like I was finally heard because she had a seizure.”
Angelman syndrome is a rare neuro-genetic disorder that causes developmental delays, problems with speech, balance, intellectual disability and seizures.
On the other hand, many with Angelman syndrome have happy personalities, friendly demeanors and are often laughing and smiling.
“She’s like a little hummingbird. You know how they go from flower to flower really fast? That’s how she is in life,” says Kim. “She lives for her friends and her family. She’s the most verbal nonverbal child. She speaks in so many ways, just not with words.”
Kim’s kids are her top priority, but over the past few years, she has made it a point to carve out time for her own self care.
“I focused on my kids being happy and put myself on the back burner,” she says. “I have to take care of myself in order to be able to take care of other people.”
Being strong and healthy for her family is vitally important to Kim, whose daughter will need her help for the rest of her life.
“I have to be her [Abigail’s] voice, because she doesn’t have one. If I don’t speak up for her , who will? I will always fight for what’s right for all of my kids. I’ll never give up.”
Kim remarried two years ago and now, she and her husband, David, enjoy raising their four kids together. Brock, 19, is a University of Memphis student and Riley, 17, enjoys horseback riding and joining Kim at the gym, F45 in Germantown.
“We love that they play loud music there. I love the people who go there. It motivates me when I have people in there who push me in a healthy way,” she says.
Exercise helps Kim work through anxiety and gives her the energy needed to keep up with the 9-year-old hummingbird in the family. Most of all, she wants to lead by example and show her kids what a healthy and balanced lifestyle looks like.
“I think it’s important that they know to be healthy, but it’s also OK to eat pizza,” she says. ““It’s just all about balance, I think.”
Between taking care of her family, making time for herself, working a full-time job and enjoying a side hustle managing the social media platforms for Bluff City K9, Kim admits that it isn’t always easy and grief can be triggered out of nowhere.
“It could be being asked to go places where I can’t go because it may be overstimulating for Abigail,” she says. “Sometimes it’s isolating and lonely for me even in a room full of people.
But Kim prides herself on the fact that she has never let her kids’ diagnoses define their lives.
“I think it’s hugely important to stay positive. It’s helped me help other moms with the same diagnoses later on. I honestly feel like this was just my journey.”
When it comes to that positive approach to life, Kim says she gets that from her daughter.
“I think we could all learn something from Abigail. I think we can learn to let things go, to have unconditional love and not sweat the small stuff. We just need to enjoy life.”