NEW BERLIN -- Nearly 10 years after a rare and fatal diagnosis, a New Berlin teen continues to beat the odds. Now, his sister is reaching new heights in an effort to find a cure.
Levi's journey with Sanfilippo syndrome started in 2009.
"Frustration I think was the worst part. Not knowing what was wrong and not being able to help your child," said Christi Ormeroid, Levi's mother.
The genetic condition is caused by an enzyme deficiency. Levi's body is unable to naturally recycle long chains of sugar molecules which build up over time, eventually causing fatal brain damage.
"'Hope' is our big word," said Ormeroid.
Levi lives with Type C, occurring in roughly one of every 1.4 million live births. With no cure and no treatments, the Ormeroids try to live life to the fullest each day.
"He loves to play sports. His main one is soccer. Right? You love to play soccer," said Ormeroid.
When she isn't working toward earning her degree in occupational therapy, Levi's older sister Logan is determined to spread Levi's message. She arrived in Mexico on Sunday, March 18, where she will embark on a six-day climb of the country's highest mountain, Pico de Orizaba.
"We are extremely proud of her for standing up for her brother -- to do this," said Ormeroid.
Logan will attempt to reach the summit, more than 18,000 feet high, with six other climbers, who are also personally affected by Sanfilippo syndrome. Their journey will begin Monday, March 19 and can be followed as they progress up the mountain.
"It's very special. Words can't even describe it," said Jason Ormeroid, Levi's father.
Logan will carry the message that "no mountain is too high" when it comes to fighting for a cure.
Children diagnosed with Sanfilippo syndrome typically don't make it out of their teens. Levi is overcoming this statistic, though, and will turn 20 this summer.