Hamilton actor Miguel Cervantes and his wife Kelly‘s three-year-old daughter Adelaide is in the final stages of her short life as she’s just entered hospice care.
Adelaide, who is week shy of her 4th birthday, was diagnosed with the neurodegenerative disorder called Infantile Spasms (IS) at 9 months old, just two months after she’d experienced her first seizure, a result of epilepsy.
“Oh, she was feisty as hell,” Kelly, 37, tells PEOPLE of her daughter, who has been battling unexplained seizures for nearly her whole life. “She is a warrior. I have never met someone stronger in my life. She shared her opinions in her own way.”
“She came into the world and she had a mission and a story,” Kelly continued. “I’m so proud that no one will ever forget her story.”
Kelly has bravely told followers about Adelaide’s health battles. She first shared the story with PEOPLE in November 2018 and has worked with the Citizens United for Research in Epilepsy (CURE), which fundraises research for a possible cure for the devastating illness. She has also chronicled some of the hardships in her popular blog Inchstones.
“When we first found out that something was wrong, we started Googling around about infantile spasms, and it was just terrifying,” Miguel told PEOPLE. “It was then that we also started to notice a loss of ability.”
Ahead of Adelaide’s first seizure, she hadn’t made the milestones many children her age do, but she sucked her thumb, and her parents were concerned when they noticed she was no longer doing that.
“Adelaide had always been a thumb sucker. When that stopped, the doctors told us that it wasn’t a sign of the seizures per se,” the Hamilton star explaind. “This was a regression within the brain. And we began to realize that this was something that could be terminal.”
Despite their efforts to ensure Adelaide had the best medical care, her health continued to decline.
“We didn’t realize her life would be this short,” Kelly told PEOPLE. “We have been flailing around for so long. There is only so much we can do for Adelaide. We are grateful for every single day we have had with her.”
Throughout the last three years, Miguel and Kelly have been leaning on each other and remaining strong for their 7-year-old son Jackson, who has in turn been their source of strength.
“He is what keeps me strong,” Kelly said. “He understands what is going on with Adelaide more than I ever thought he would. But at his core, he’s still just a 7-year-old.”
She continued, “We might be going through the worst thing ever, but he is the one that gets us up when we are just fighting emotionally to get out of bed.”
Miguel and Kelly intend on continuing the fight even after their daughter passes away.
“We have been giving this platform to talk about Infantile Spasms and epilepsy,” said Miguel. “And we have been given this platform to tell people about Adelaide. And that’s exactly what we intend to do.”