CINCINNATI — There have been a lot of ups and downs for one Ohio mom and dad as they navigate parenting not one, but two children with a terminal and rare genetic disease.
While the parents have been open about their struggles as a family, they also want others to know more about their children’s disabilities.
The holidays should be a time of joy. At the Arnold’s, it is, but it’s mixed with sadness.
Donald and Jillian’s two kids, Roman and Stella, were both born with a very rare and terminal genetic disease called ASMD. Roman was diagnosed just three days after the couple found out they were pregnant with Stella.
“We all kind of thought like, oh, it's fine," Jillian said before Roman was diagnosed. "Like he's fine, he's perfect. And then, long story short, one test led to another test, which led to his diagnosis of ASMD.”
The disease is often compared to Alzheimer’s in children, with their motor skills gradually deteriorating.
“It happened overnight in some ways," Donald said. "Where all of a sudden, like a week later, and we’re like, she's not sitting up anymore or she's not doing this. And that's definitely a, like a heartbreaking feeling.”
And when they found out Roman and then Stella were diagnosed with the more severe type of ASMD, which would impact their neurological function, they knew they had to take action.
“It's like a ticking time bomb," Jillian said. "We knew that it was the life span was three years. So we went into like crisis mode and started trying to figure out what we can do. We couldn't just, like, sit there and watch our son just deteriorate. And at the time, there was no cures, no treatments.”
Jillian stays active on social media and hosts a podcast to spread awareness. But this year, she also wrote a children’s book depicting her family’s journey. "Soaring Together" shares the story of two butterflies, Roman and Stella, who are unable to fly when they get out of their chrysalis.
“No matter how hard they fluttered their wings or how high they leapt into the air, they simply couldn’t get their little bodies to do what their brains wanted them to do," Jillian read from the book.
Jillian hopes her book inspires parents just as her kids have inspired her and her husband.
“Our kids taught us a different perspective and that message is in this book, too," she said. "So it’s always a good reminder every time we read it.”
Whether it’s together as a family, or on their own eye gaze device, reading the book is a new family tradition.
“It’s something that I feel like never gets old for us," Jillian said.
That puts everything into perspective.
“Roman turned six this year, which was amazing," Jillian said. "And Stella is going to be five in January. So that alone, you know, just shows that they're definitely changing the trajectory of this disease. And we just couldn't be prouder of them.”
Roman and Stella receive enzyme replacement treatment to help stop the impacts of the disease on their bodies. They’re also taking a new drug that doctors hope could slow down the neurological progression of the disease. Click here to learn more about Roman and Stella’s journey and the book they inspired.