CHAPEL HILL (WTVD) --Kellen Hassell wants to draw attention to Angelman Syndrome, a rare developmental disorder that causes a person to need assistance for life, one that affects his 4-year-old son Luciano, or Luc as mom and dad call him.
Hassell said limitations caused by Angelman Syndrome include limited motor development, limited communication, and severe intellectual disability.
He's passionate about drawing attention to the disorder to raise funds for research for a cure, so he took his passion on the road and rode his bike from Miami, Fla., to Chapel Hill in seven days, travelling almost 1,000 miles, all to raise money for the cause.
He raised more than $15,000 and presented the check to UNC's Carolina Institute for Developmental Disabilities Monday.
"I wanted some sort of a platform to say how much we love him and how much all 'Angel families' love their own children," Hassell said through tears at the presentation. "But also say that we need to do something about it."
Watch his emotional address here.
Donate to Hassell's cause here.
Hassell is an avid cyclist in Miami, where he's from, and clinical assistant professor at the Florida International University.
He teaches a course on global issues and trends in health care and said that when it comes down to problem-solving, it's all about making people care.
"Some days when you're riding a bike everything is going perfectly and you feel like you're flying, and other days it's really, really challenging and you feel like you never want to do it again," Hassell said. "And sometimes those similar feelings come up in raising a child with Angelman Syndrome.
"Some days it's absolutely inspiring and it'll help you conquer a whole bunch of challenges you thought you might not have been able to, and other times the seemingly most simple thing has become really, really hard."
Hassell said his motivation for drawing attention to Angelman Syndrome research comes from reflecting on the idea that one day he and his wife might not be around to take care of their son anymore.
"That is a burden that may fall to his siblings, and it may fall to the rest of the community," Hassell said. "So by way of doing the ride, it felt like an opportunity to show that the community an issue that we all can unite together, become educated on, and then pool our resources financially to help find a cure."
Hassell rode his bike from Miami to Chapel Hill, in one continues trip, cycling through the day and stopping in these cities to rest for the night - Cape Canaveral, Fla.; Savannah, Ga.; Columbia, S.C.; Charlotte, N.C.
Check out some of the photos from his trip below:
Report a Typo