Glens Falls Chronicle Serving the Glens Falls/Lake George region; Warren, Washington and northern Saratoga counties since 1980
By Cathy DeDe, Chronicle Managing Editor
Luci DiDio doesn’t have much memory of the year she was a recipient of the South High Marathon Dance.
It was 2013, and she was four years old. “I was in and out of multiple hospitals, for really as long as I could remember when I was that young.”
“Now we know,” Luci says, “there’s a bunch of food proteins my body can’t break down.”
Mom recalls, “The doctors kept saying, hey, she’s a healthy little girl. We don’t know what’s wrong with her. They knew it wasn’t epilepsy,” despite the seizures, for example.
“So they just kept testing and testing her. We were traveling to and from Boston’s Children’s Hospital, one to two days a week
“My husband and I both have professional jobs, and we have decent health insurance. But when you start taking off two days a week, every single week for year after year, and then she’d be hospitalized for a week or two at a time…”
Family Leave laws were different, Mrs. DiDio says. “You weren’t getting paid. The bills were collecting.”
She says friends, neighbors, people from church and school were following their story on social media.
“An acquaintance of ours said, ‘Would you be okay if we nominated Luci for the Marathon?’ and she was accepted,” Mrs. DiDio says. The family received about $10,000 that year, she recalls.
Did it help? “Oh my gosh,” Mrs. DiDio says. “It helped pay bills, with gas and tolls and parking, co-pays. My family and my husband’s family were really trying to help. We both had professional jobs, but it was like endless bills, hospital bills, specialist bills, and every specialist had their own copay…”
Nail polish; ‘gratitude’
Luci says, “The only thing I remember from Marathon was one of the chairpeople came into the recipient room to paint my nails, and she told me that she snuck it in, so don’t tell anybody.
“She painted my nails and she let me paint hers. And I ended up not liking it. I took it off and I told her I didn’t like it. She’s like, It’s okay. I don’t like them either. I have no idea who that person is. I definitely remember that made me feel a little better that night.”
Mom remembers “feeling repeatedly overwhelmed with gratitude, and the guilt of knowing they picked us. I went to South High. I was a dancer, and then a spectator. It’s such a different feeling, being up front.”
Luci says, “A lot of people talk about how Marathon is really special to them.
“I’m like, I don’t want to be rude. But sometimes I feel like it’s more special to me, because I’m giving back to something I know helped me and my family a lot.
“I feel like I never really knew how important it was until middle school when we started dancing for the one hour. And now that I get to do the full 28, it’s so crazy to me.”
She’s also raised $915 for Marathon, well above the $150 minimum to dance.
Diagnosis by sad coincidence
The mystery of Luci’s illness was solved shortly after that 2013 Marathon, sureally and unfortunately in part because of the Boston Marathon bombing.
Luci was in Albany Med, scheduled for more testing at Boston Children’s Hospital when the transport ambulance was turned around, Mrs. DiDio recalls, because of the bombing.
The “bittersweet” result was a new set of eyes, Mrs. Didio says. A group of Albany Med doctors came together at once, rather than each doctor testing Luci separately as had been happening in Boston.
Their holistic diagnosis: “These were not common, but they were all symptoms, not of food allergies, but of food intolerances,” Mrs. DiDio says.
Treatments began immediately — mostly eliminating and then gradually introducing foods, to see what she could process. “It was such a sudden switch,” Mrs. DiDio says.
There are still things Luci can’t eat, but she is healthy — and dancing.
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