Family Says Four-Year-Old's Childhood Dementia Has 'Taken So Much' But It 'Hasn't Taken His Joy'

The family of Maverick Lana is raising money for other families struggling with the cruel disorder Sanfilippo Syndrome

NEED TO KNOW

• Maverick Lana’s family is raising awareness and funds for Sanfilippo Syndrome, a rare disorder called “childhood dementia”
• The family travels weekly from Ohio to North Carolina for clinical trials that have helped Maverick regain some abilities
• Their Mighty Maverick 5K fundraiser supports research and highlights other local families affected by the devastating condition

An Ohio family is raising money to fight Sanfilippo Syndrome, a rare and brutal disorder that's dubbed "childhood dementia" because of its devastating symptoms. 

"Sanfilippo has taken so much from Maverick," Tristan Lana tells Local 12 about his four-year-old son's rare genetic disorder. Sanfilippo Syndrome primarily impacts the central nervous system and causes cognitive, behavioral, and physical symptoms, according to Cleveland Clinic, which “lead to premature death.” There is no cure, and the only treatment is management of symptoms, which include gastrointestinal and ear, nose, and throat problems, along with intellectual disabilities that worsen over time — hence its heartbreaking nickname “childhood dementia.”

As mom Autumn Lana explains, "They lose skills that they once had. So, they forget how to talk, feed themselves, they forget how to play with a lot of toys, and longterm that can lead to losing the ability to even walk."

Maverick is already showing symptoms: "It's taken his ability to speak, his ability to to play safely," Tristan told the outlet. Fortunately, some of his lost abilities have returned, thanks to the results of a clinical trial that Autumn says is keeping Maverick "relatively stable." 

He's started doing things that he "lost this past year, like shooting baskets again and giving high fives," she says.

But treatment is hard to come by. The Lanas fly every week from their home in Lebanon, Ohio, to North Carolina for Maverick's care — and they're not the only ones seeking treatment. Which is why the family has organized the annual Mighty Maverick 5K to raise funds for the Cure Sanfilippo Foundation. "There's five kids in our immediate community who are fighting a really hard fight and need support," says Autumn about the fundraiser, which is also a celebration of Maverick's 4th birthday.

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Last year, they raised $40,000 for research. At this year's June 20 event, Autumn says she hopes that "we can highlight those other families as well, so that people know that it's actually not that rare when there's so many kids in our immediate community who are going through it."

"One thing it hasn't taken is his joy," Tristan told the outlet. "So, we're we're holding on to that, living day to day, thankful for it."

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