Lemons and cycling could help save toddler's life

Local cyclist riding 200 miles to help child with rare disease

Sean Griffith thinks nothing of a 50-mile bike ride. He has completed many before. This week’s 200-mile journey from coast to coast in Florida is a challenge he’s anticipated for a while now.

“It’s going to be fun,” he said. “Something I’ll never forget.”

Sean will bike across Florida this week in honor of a little girl named Marian. The California toddler is fighting the fatal disease Niemann-Pick Type-C, also knows as childhood Alzheimer's. He hopes his ride brings awareness to the need for funding for kids like Marian.  

Sean is starting his ride Wednesday in Cocoa Beach with a 50-mile ride to Nemours Children’s Hospital in Orlando. From there, he’ll head to Lakeland Regional Hospital Thursday and Tampa General and John’s Hopkins All Children’s in St. Petersburg on Friday. 

Saturday he’ll complete his 200 miles by riding from All Children’s to Tradewinds Resort. At each stop, in honor of Marian’s N-P-C, he’ll ask everyone to do the NO PUCKER CHALLENGE. Basically, bite a lemon, try not to pucker and post a pic on social media with #NoPuckerChallenge.

The hope is, eventually enough people will do the challenge and learn about N-P-C and help save a complete stranger like Marian.

“All I got to do is look down. Do my legs hurt? Do they burn and are they cramping? Yes, but it’s nothing that compares to what Marian and other children with NPC face every day,” says Griffith, who has served as a pediatric nurse in Florida for seven years. “A little cramping, a little soreness, I’m tired, I look down, it gives me that morale and that boost to go.”

Marian needs treatments through her spinal cord to battle her childhood Alzheimer’s every two weeks. The two have never met.

Griffith will meet with two children, one from Alabama and one from Virginia, battling NPC upon completing his ride on Saturday, November 4. There will be dozens of people welcoming him home at a reception at Tradewinds resort.

Among Griffith’s sponsors, Chick-Fil-A and St. Pete Bicycle and Fitness have helped him make this ride possible. 

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