There is a lot of pain and misfortune in our world, but God’s promise to be faithful to us remains through it all. We can’t always explain why things happen the way they do, but we need to trust that there is a purpose for our pain. Christi Ormeroid is a loving mother who has had to watch her 19-year-old son slowly lose his mind. Her son, Levi, has Sanfilippo Syndrome which has caused the boy’s health to start deteriorating when he was just a toddler. “By the time he was 4, he had started losing his words slowly and was down to two-word sentences,” Ormeroid said.
Sanfilippo Syndrome is a rare genetic condition is caused by an enzyme deficiency that affects about 1 in 70,000 children in the United States. For Levi, the diagnosis has been life-changing. Between the ages of 8 and 17, Levi forgot how to get dressed, hold a pencil, eat solids, and could no longer speak. Now, at the age of 19, Levi has the mental age of an 18-month-old.”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,” Ormeroid said.
Before the official diagnosis, Ormeroid struggled to figure out what was wrong with her boy. “Everybody said, ‘He’s a boy, they learn slower than girls’,” Ormeroid said. “I would tell myself I was overreacting, but then the next day it was like, ‘Something isn’t right.'” Levi was diagnosed with Sanfilippo Syndrome when he was 10 years old, and the realization hit his mother like a ton of bricks. “I just remember I started crying and was in my own little world. It was like a dream and I couldn’t wake up,” Ormeroid said.
Sanfilippo Syndrome is caused by a deficiency in certain enzymes that are supposed to break down long chains of sugar molecules, according to the National Library of Medicine. As a result of this, the molecules build up in different parts of the body and thus cause severe intellectual disability. Most people who have Sanfilippo Syndrome live into their teenage years, while others with more severe forms of the disease die at an earlier age.
The disease has also been called “Childhood Alzheimer’s” because of the similar progression both diseases take. It’s hard for anyone to watch a loved one suffer from Alzheimer’s, but imagine having to watch your child go through the same thing. “Everything you wish your kid could do is gone. It was like being stabbed in the heart.” Ormeroid said, “Levi’s favorite song is Jessie’s Girl, by Rick Springfield. He would sing along and just be so happy.”
Now, though, the disease has prevented Levi from singing. “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,” Ormeroid said. And there is still no cure for this disease, but Levi’s family is trying to help raise awareness the best they can. Levi’s 23-year-old sister, Logan, plans to climb to the top of Pico de Orizaba, which is a stratovolcano located in Mexico, to raise $100,000 for research.
Share this story to help raise awareness about Sanfilippo Syndrome and encourage others to pray for Levi.