featured family By: Maria Smietana
Ugoletti Family Meet the
Don, Tanya, Mattea and Kannon
When Tanya and Don Ugoletti had their second child eight years ago, no one suspected any problems at first. Their first child, Mattea, was born with no medical issues, and Tanya had a normal delivery with Kannon. But as Kannon got close to 6 months, Tanya noticed “that he just didn’t seem to be hitting the normal milestones.” Tanya also noticed that Kannon had episodes where his arms or head would jerk slightly. She had the presence of mind to quickly take a video when the movements happened to occur on the day of his 6-month check-up. The pediatrician realized immediately that Kannon had infantile spasms, a form of epilepsy that looks innocent enough but is actually quite catastrophic. He was immediately started on daily injections of adrenocorticotropin (ACTH), a hormone made by the human pituitary gland. It’s very effective but comes at a cost of $25,000 a vial. He was treated for six weeks, and Tanya recalled that he suffered few side effects and had little weight gain. That was the good news. But Kannon’s challenges were only beginning. Doctors discovered that Kannon had suffered a stroke in-utero. Testing revealed that he had inherited Factor V Leiden thrombophilia, a condition that increases the chance of abnormal blood clotting and raises the risk of stroke. About 70% of his right brain hemisphere was destroyed, leaving him with spastic triplegic cerebral palsy, meaning he now had spastic movements in three of his limbs — both legs and his left arm. The epileptic seizures returned, too, though this time they were myoclonic and partial (focal) seizures, which could be controlled with an array of medications that don’t cost as much as a house.
12 Special Needs Living • January 2022
Between the ages of 2 and 5, Kannon’s seizures remained largely under control. Living on the northeast side of Marion County, the Ugolettis are fortunate to be in a school system that allowed Kannon to attend full-day developmental pre-school. “I have lived here my whole life and we recently moved into the home I grew up in,” Tanya said. “We love the school district and the diversity it offers.” Despite dealing with their son’s numerous medical issues, Tanya and Don have both continued to work. Don, who grew up in a small town near Terre Haute, works for a utility company. Tanya was a service coordinator for First Steps, Indiana’s early intervention program for children with developmental delays and disabilities. “As a parent with a disabled child, I could give my [client] families a unique perspective,” Tanya said. “I have been on both sides--receiving services and providing them!” (Tanya now works for SpeakIndy, a developmental preschool and therapy clinic). She especially credits Family Voices Indiana, a non-profit that provides information and support to special needs families, with motivating her to sign up for Indiana’s Medicaid Support Waiver. “I was very reluctant to apply due to some unfounded anxiety,” she said. “Once I actually got started, it was very easy.” Her favorite memory is from a day when she had Kannon in the car, and out of the blue, he said, “I love you, mommy!” She was so surprised that she had to ask her mother, who was also in the car, if she had heard Kannon correctly. “He was probably close to five,” Tanya recalled, “and he did not repeat [those words] for probably another year, but it was beautiful!”
