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Mack's Ride Honors Ill Child

Courant Community

The biker community gathered for the annual 'Mack's Ride,' at the Thompsonville Moose Lodge July 29.

The ride honored Max Moran, a young boy inflicted with Niemann-Pick Type C Disease.

Laura Thompson, Max's mother, said the disease is a progressive and fatal genetic disorder. Niemann-Pick is considered one of the rarest diagnosis, which inflicts only a few hundred children worldwide.

The Ara Parseghian Medical Research Foundation, at Notre Dame University, continues to lead the effort to find a cure.

Thompson said the medical community refers to Niemann-Pick as "childhood Alzheimer's," a condition whereby brain cells fill up with cholesterol and toxins to dangerous levels, finally "exploding."

As the brain cells die, Max's physical and neurological functions continue to erode. At last year's ride, Thompson said Max was running around with the other children. A year later, the boy uses a wheelchair.

"Children who are diagnosed early normally have shorter life-expectancy. Within a year, he's had a significant decline," Thompson.

When Max was 15 months old, doctors noted he had an enlarged liver and spleen, which raised a red flag. He was sent to Connecticut Children's Medical Center for further tests. A liver biopsy when Max was two years old confirmed he had a serious condition.

"It was agonizing waiting to know what was going on with my little boy," she said.

A test at Yale-New Haven Hospital revealed Niemann-Pick.

"My whole world just stopped," she said. "We had to plan how we were going to handle this."

Medical trials are underway at the National Institute of Health, and centers around the country.

"This is a super rare disease. It's pretty hard to get funding," Thompson said. "It's devastating."

Thompson and Max's father both carry the genetic markers for Niemann-Pick.

Proceeds from the ride will be sent to the Ara Parseghian Medical Research Foundation. Parseghian is considered a football coaching legend at the university. Three of Parseghian's grandchildren were diagnosed with the disease.

"It's good to know I will be giving something back to research," she said.

The event's T-shirts were emblazoned with the Batman logo. Max loves all things Batman. Before the bikers saddled up, Max got a ride in a Polaris Sling Shot, a three-wheeled vehicle that looks like the fictional Batmobile.

Last year's ride collected nearly $6,000, a figure the organizers hoped to match this year.

Tammy Harmon, the senior regent for the Moose Lodge, said, "Max has touched everybody's heart here. If you ask any person that's a member, they'll tell you he means a lot. His grandpa works very hard to get these benefits going. We celebrate to help find a cure for him (Max)."

Volunteers arrived early at the lodge, setting up tents, bar-b-ques, and a stage for the bands. The riders paid a $20 entry fee to support the cause. Enfield police officers helped redirect, and stop, traffic along the riders' route.

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