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Family, friends, supporters gather to wish Baby Easton a Happy 1st Birthday

Easton Friedel, the Weedsport baby who suffers from a rare skin disorder, celebrated his first birthday Sunday at Seneca Lake State Park.
GENEVA, N.Y. (WSYR-TV) - Easton Friedel, the Weedsport baby who suffers from a rare skin disorder, celebrated his first birthday Sunday at Seneca Lake State Park.
 
The party was a unique celebration because the family was not sure they would even get to spend a year with Easton. Easton's great aunt, Cheri Machemer said, "We didn't think we'd all be here today."
 
Easton suffers from Epidermolysis Bullosa or EB, a disorder that causes his skin to blister all over his body. Often times, it can be fatal.
 
Easton's grandfather, Ken Nichols said, "When you consider that you go to a day to day existence with EB children, know that we've hit a milestone."
 
This baby's story has captured the hearts of Central New York, gaining more than 50,000 likes on a Facebook page. The family used the celebration not only for family and close friends, but to thank Easton's supporters also.
 
Nichols said, "It was important for us to let them know that we appreciate everything they've done for us."
 
Some of those supporters, who never met the Friedel family before Sunday, came out to celebrate.
 
Melissa Thran came from Canadaigua and has been following Easton since his birth. She said, "I think he's a true fighter and an inspiration and neat for the family to open the party to the public." She brought along a gift for the baby.
 
Michelle Venezia had her son Niko just three weeks before Danielle Friedel gave birth to Easton, so Michelle says Easton has a special place in her heart. She said, "With every milestone Niko goes through, I think about Easton."

As a mother, Michelle knows how special the day is. She said, "It's a special moment not just for the baby, but as a mother. That first year, even with a baby that's perfectly healthy, is just so hard. The first birthday is not just celebrating the baby's birthday but also for the family, celebrating a special day and how far we've come."

 
Easton's family is now using their story to inspire others and to bring awareness to the EB disease. Nichols said, "This isn't just a small issue, it's a big issue. We want people to know that there's a need for more and more research."

Nichols says the community has been so generous to his family and wants people to also consider donating to the national organizations that help with EB research, such as DebRa, the Dystrophic Epidermolysis Bullosa Research Association.




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