Easton Friedel teaches people each moment is precious at his first birthday

Easton Friedel turns one on August 23rd.


oday was a special day for little Easton Friedel. He celebrated his first birthday with family, friends and even complete strangers at Seneca Lake State Park in Geneva.

Unlike most birthday parties, the family asked guests to come without gifts and to just come themselves to enjoy the special moment. Instead, they hope people will donate to a select group of charities focused on researching and raising awareness of EB, Easton's rare genetic skin disease which he's been battling since birth.

His Aunt Michelle Matro came up from Florida today. "This is pure love, it's pure love. He is spreading pure love and unifying people and that... That's his lot in life. Most people don't live the lives they came here to live and he started out doing it. It's pretty fabulous and for a year later for him to be here, that should I hope live in the moment and every moment's precious," says Matro.

Easton's Grandfather Kenneth Nichols was in Geneva celebrating his grandson's first birthday."It's one of those things you never realize was never going to happen. You take it for granted that when you have kids or grandchildren that a first birthday is just a first birthday, but when you consider the face and the issues that he's gone through and the trauma. The fact that there's been a couple times when we thought that we had lost him. To know that he's now made it here is absolutely amazing," says Nichols.

You can donate to I Refuse EB in Easton's name or to Debra, in lieu of gifts.