FD girl named Hawkeye Kid Captain
Neuromuscular disorder doesn’t stop Lee
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Lily Lee, of Fort Dodge, was meeting all of her early milestones, but her parents became concerned when she still wasn't walking well after her first birthday.
"It was a completely perfect normal pregnancy and birth," says Lily's mother, Mya Lee. "There was not a single issue."
When Lily still wasn't walking at 14 months, her mother contacted their local pediatrician. At first, the doctor wasn't overly concerned. But over the next two months, Lily began to progressively weaken. By 16 months, she could only take a few unsteady steps. Tests at a local hospital didn't reveal anything abnormal, so the family was referred to University of Iowa Health Care Stead Family Children's Hospital.
Lily started genetic testing when she was 20 months old. She was examined by Dr. Seth Perlman, a pediatric neurologist, who suspected the toddler had spinal muscular atrophy (SMA), an often fatal neuromuscular disorder that causes muscle deterioration and weakness.
Several weeks passed before Perlman's suspicions were confirmed.
Mya Lee remembers sitting in her car crying after hearing Lily's diagnosis in early 2016. At the time, no treatment was available and most children died of the disorder before their teens.
"We were devastated to learn that our perfectly healthy daughter's muscles would slowly deteriorate over time and that nothing could stop the progression of the disease," she said. "There was absolutely nothing we could do to help her."
Strengthened by years of treatment with a medicine that became available soon after her diagnosis, Lily is leading a full life. And on Saturday she will be the honorary leader of the University of Iowa Hawkeyes football team when it takes on the University of Michigan Wolverines.
She was named the Kid Captain for that game.
Established in 2009, the Kid Captain program honors pediatric patients by sharing their inspirational stories of resilience.
Years before she became a Kid Captain and just months after Lily's diagnosis, news came that would change everything. Shortly before Christmas, Mya received an email: The FDA had approved spinraza, the first treatment for spinal muscular atrophy. Designed to slow the progression of SMA and improve muscle strength, the drug offered something the family had been missing since Lily's diagnosis: hope.
Hospital staff helped obtain insurance approval and by February 2017, Lily received her first shot, the first patient at Stead Family Children's Hospital to be treated with the drug.
She now receives treatment through a lumbar puncture in her spine every four months to stop progression of the disease. She also participates in a clinical research study that requires monthly infusions, intended to help build muscle.
At about the same time she started genetic testing, Lily received her first wheelchair.
"The second that she sat in this little, tiny wheelchair, she went all over the place," Mya Lee said. "At this point, she could crawl, but if she went anywhere, she was just being carried by us. But with this wheelchair, she just started going. She just knew how to do it."
Another memorable occasion happened when Lily returned for one of her regular lumbar punctures, which she receives without sedation. Knowing that "Frozen" was her favorite movie at the time, nurses decorated the procedure room with sparkling snowflakes and other themed decorations.
"They even gave Lily an Elsa dress," Mya Lee said. "I remember her eyes lit up. She loved it. Small acts like this made a frightening experience feel safe and special for her."
Child Life specialists also have helped Lily navigate the procedures, as she regularly makes the three-hour trip to Iowa City from the family's home in Fort Dodge.
"They always make her feel special," Mya Lee said. "She never leaves in a bad mood. They all know her; they all love her. It's so amazing knowing that we walk in and everyone's happy to see her.
“They continually remind Lily how brave she is and make her feel proud of herself. Their compassion, dedication, and commitment to both her medical care and emotional well-being have meant everything to our family. I would not want her to be anywhere else.”
Now 12 and in seventh grade, Lily is a good student, enjoys using her handcycle bike, and spending time with her friends at school. She loves swimming at summer camp and hopes to be a cosmetologist someday.
Her father, Chad, made parallel bars for Lily so she could practice walking. Mya says Lily's arm strength has increased and she is able to use her arms to help her bear weight in her legs.
"When Lily was diagnosed, there was nothing," she said, adding she is grateful the therapy became available when it did. "The sooner you get (treatment), the better off you are."