The mum of a teenager with childhood Alzheimer’s has revealed her heartbreak after it stole his ability to speak – and sing along to his favorite song.
Levi Ormeroid, 19, was able to ride a bike without stabilisers, eat solid foods and colour in pictures when he was a toddler.
He would chatter with friends, could count to 10 and sing the words to his favorite song, Jessie’s Girl by Rick Springfield.
Now his eyes light up when he hears the pop classic but he no longer belts out the words after Sanfilippo Syndrome turned the clock back on his mental age.
The rare, genetic disorder causes brain damage and is dubbed ‘childhood Alzheimer’s’ because of its similarity to the degenerative disease, which typically affects the elderly.
It resulted in Levi forgetting how to dress himself at the age of eight, how to hold a pencil aged ten, how to eat solids aged 11 and how to speak aged 17.
The incurable condition, which affects one in 70,000 children in the US and has a life expectancy of around 15, has left the youngster with the mental age of an 18 month old.
Levi’s mom Christi Ormeroid, 43, said it’s been heartbreaking watching her son’s condition gradually deteriorate and knowing it will eventually rob him of his life.
Now the family is calling for more research into Sanfilippo in a bid to find treatment and a cure and his sister Logan, 23, is on a quest to raise $100,000 for the cause.
Levi’s mom and carer Christi, who lives with her husband, engineering program manager Jason, 44, of Milwaukee, Wisconsin, said: “Levi was just like any other child.
“He was riding his bike, playing sports like soccer and he was potty trained. He was behind on his speech but was still talking in sentences.
“By the time he was four he had started losing his words slowly and was down to two-word sentences.
“Everybody said, ‘He’s a boy, they learn slower than girls.’
“I would tell myself I was overreacting but then the next day it was like, ‘Something isn’t right.’
“The worst day of my life was in 2009 when we found out it was Sanfilippo Syndrome.
“I just remember I started crying and was in my own little world. 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.
She added: “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.
“He has this look in his eyes that he is mentally singing along. It’s heartbreaking.
“This disease is robbing him and others from having a typical life.
“It’s important to me and others to find a cure now for our children and for the future undiagnosed children.
“No parent should have to watch their child lose skills they once learned and suffer.
“No parent should have to worry when this disease is going to take their child from them.”
Sanfilippo Syndrome is caused by a deficiency in one of the enzymes needed to break down long chains of sugar molecules.
Instead, the body stores these molecules in the cells and that storage causes progressive damage.
Type C, which Levi has, is caused by a defect in the HGSNAT gene.
People with this type of Sanfilippo are missing or do not produce enough acetyl-CoAlpha-glucosaminide acetyltransferase.
After six years of tests and appointments with doctors in a fight for answers, Levi was finally diagnosed with the disorder in January 2009 aged ten.
She said: “It is like Alzheimer’s. It is like everything is there in his mind but it just won’t come out – he can’t express himself.
“As a mom, it is hard. I felt hate at first because I would see friends whose boys were Levi’s age and I would see them getting driving lessens or excelling in things.
“It has been challenge but mostly out of this whole thing, Levi has taught us so much.
“I look at life differently now and never take anything for granted.
“We just need to find a cure.
“We are so rare with not a large number of patients so the drug companies don’t profit.
“We need funding to support our gene therapy and clinical trials .
“We all need to do more.”
Levi’s sister Logan is currently attempting to climb to the top of Pico de Orizaba, a stratovolcano in Mexico standing at 18,491ft.
The quest, which began on Sunday, March 18, will take six days and Logan is hoping to raise $100,000 in the process for Team Sanfilippo Foundation.
To donate and help fund research into the disease, visit: https://www.gofundme.com/summittothesun2018
