Adorable Ian had a relatively uneventful birth, and all seemed well for the first few months, until—without warning—he suffered a grand mal seizure at only 4 months old. During this frightening episode, his mother, Leilani Daly, watched helplessly as he lost consciousness and endured violent muscle contractions. She rushed him to the local emergency department for help, as she had never witnessed anything like this before.
It was there where Leilani truly began to feel hopeless. After monitoring Ian for only a few hours, the on-call medical team simply sent Ian and his mom home armed with nothing more than a phone number for a neurologist. Once back at their house, Ian continued to seize in his father’s arms, so Leilani packed up the car and headed straight to another children’s hospital for a second opinion. It was there that Ian was correctly diagnosed with cortical dysplasia and focal seizures.
“They put him on several anti-seizure medications and sent us home,” Leilani recalls. “That was the beginning of a series of emergency admissions, adding more and more medications, and being sent home with no answers—and no solution.”
It wasn’t long before Ian’s seizure activity became something known as infantile spasms. Infantile spasms are a specific type of seizure seen most often in the first year of life. Most doctors agree that once detected it’s critical to begin medicinal therapy as soon as possible to stop possible ongoing damage.
Ian seated comfortably in a shopping cart using the GoTo seat Holton’s Heroes gifted him during a trip to Target with his mom.
Leilani quickly figured out that all doctors are not created equal. She traveled to numerous states to meet with neurologists until she settled on UCLA in California. There, she felt she had a team that was able to place Ian on a positive path to becoming seizure-free one day.
“We returned to UCLA in June of 2019 for another EEG monitoring,” Leilani told us. “It revealed that after 337 days of hundreds of seizures a day and 9 failed medications, Ian was seizure-free.”
Holton’s Heroes was not only inspired by Ian’s improvements but eager to help further his rehabilitative progress. Thanks to our donors, we were able to provide Ian with a new GoTo postural support seat and WeGo pushchair.
“Ian is 2 weeks away from his 2nd birthday and we are working on independent sitting. The GoTo seat gifted from Holton’s Heroes gives Ian the support he needs and the opportunity to sit like the big kids,” Leilani says of Ian’s gift. “Recently, Ian was able to sit next to his peers during a toddler group he attends. Before the GoTo he would be on his back on the floor.”
The GoTo seat is portable and allows Ian to participate in endless activities. As you can see in the photo, Ian even gets to enjoy shopping trips to Target with his mom, as all little boys should do. It’s definitely a rite of passage. ;)
“Thank you Holton’s Heroes for helping Ian live life to its fullest by giving him opportunities he would not otherwise be able to participate in.”
“Since Tati’s accident, birthdays and Christmas have been hard because it’s a struggle to find appropriate gifts for a child with such severe needs,” Tati’s mom admits about the reality of raising a near-fatal drowning victim. Learn how Holton’s Heroes made this past holiday extra special for Tati and her whole family.