Leland Ianno is eight years old, but he’s an old soul with a deep curiosity, a love of people, and a passion for history. His mom, Holly, says “Leland is fascinated by historical times but also the history of the people around him. He wants to know everything, and he’ll sit and have a conversation with you for hours and you feel like you’re talking to a much older person.”
While Leland has a love of learning about others, he and Holly have their own remarkable story to tell, which includes but is certainly not limited to their experience with SMA.
“Leland had been in physical therapy since his early childhood due to toe walking, however, his pediatrician and physical therapist couldn’t put a finger on why he had lower body weakness,” Holly shared. As Leland progressed in age, she couldn’t shake the feeling that something wasn’t quite right.
As Holly continued to look into what might be happening with Leland, she became pregnant with a baby girl and sadly lost the baby in 2020 at 18 weeks and six days. Her obstetrician suggested genetic testing. The test results came back showing that both Holly and her husband are carriers of SMA. Despite this information, they hadn’t yet made the connection to Leland.
When Holly originally looked into SMA after finding out she was a carrier, she mostly saw SMA Type 1 prognosis and didn't think that translated to Leland.
“Fast forward, and I became pregnant again and was advised to have an amniocentesis. In that process I was on Instagram searching hashtags and that’s when I looked at my husband and told him I thought Leland had SMA. My husband is very big on research, and he began doing his own research and we both came to the conclusion that Leland may be Type 3.”
Within a couple days, they were at an appointment at Stonybrook Hospital in Long Island, New York for testing. A month later, test results showed that Leland indeed had SMA Type 3.
“I say to my son, you're going to have such power in other places of life. It may not be running, or it may not be playing soccer or baseball, but using your voice and being who you are is what is going to make you powerful. And that’s the same for me as his mom. I’m going to be his voice forever.”
Life After Diagnosis
While determining Leland’s diagnosis took more than seven years, life since that day has been a whirlwind. Holly says, “We received his diagnosis a week before we were moving and leaving New York, so panic set in. I thought, I’m leaving New York with all this healthcare. What will we do?”
Luckily, their team at Stonybrook helped the Ianno's find a clinic 15 minutes from thier new home in Greenville, South Carolina, with one of the only SMA doctors in the area.
“We’re still in the learning process and I think we’ll forever be in the learning process. I’m in the mentality of taking it a day at a time because I don’t know any other way to handle it,” says Holly.
When asked what he would say to other kids with SMA, Leland says, “Remain strong and don’t stop doing things you love because you have SMA. Keep being strong.”