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Levi was like any other kid.
He rode his bike without training wheels, ate solid foods and loved colouring in pictures – but now all that has been taken from him, Levi’s mother, Christi Ormeroid, revealed to The Mirror.
“Levi was just like any other child,” Christi says. “But at only four years old, he slowly started losing his words.
“I would tell myself I was overreacting but then the next day it was like, ‘Something isn’t right’,” said Christi.
A plethora of tests revealed little Levi suffers from Sanfilippo Syndrome, a rare genetic disorder that causes brain damage.
According to The Mirror, the incurable condition has left Levi – now 19 – with the mental age of an 18-month-old.
Daily Mail reports that the condition is known as childhood Alzheimer’s because of its similarity to the degenerative disease which typically affects the elderly.
The condition affects one in 70 000 children in the US and has a life expectancy of around 15, according to Sanfilippo.org.
“Over time, brain cells fill up with waste that the body is unable to process,” the site explains.
“As the brain gets progressively damaged, children experience hyperactivity, sleeplessness, loss of speech and cognitive skills, mental retardation, cardiac issues, seizures, loss of mobility, dementia and finally death, usually before adulthood.”
Levi’s 2009 diagnosis was heartbreaking for the mom from Milwaukee in Wisconsin.
"I just remember I started crying and was in my own little world,” Christi recalls. “It was like a dream and I couldn't wake up. Everything you wish your kid could do is gone. It was like being stabbed in the heart.”
Now, her son can’t even sing along to his favourite song.
“Levi's favorite song is Jessie's Girl, by Rick Springfield. He would sing along and just be so happy.”
“Now when he hears the song he still lights up and you can see the spark in his eyes but he is unable to sing along,” she says.
The family is calling for more research into Sanfilippo in a bid to find treatment and a cure.
Levi’s sister, Logan (23), is on a quest to raise $100 000 (R1,1 million) for Team Sanfilippo Foundation on Go Fund Me, by climbing to the top of Pico de Orizaba, a strato-volcano in Mexico standing at 5 636 m.
“The goal is to prove that no mountain is too high when it comes to saving children’s lives from Sanfilippo Syndrome,” the leader of Logan’s group wrote on the crowdfunding site.
The hike, which began on Sunday, 18 March, will take six days.
Sources: Go Fund Me, the Mirror, Daily Mail
