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Updated: Jul 2, 2021

Leo is a kind, smart, funny and loving three and a half year old boy. He loves all things nature, being active, and spending time with both of his families at his mom’s and dad’s homes.

Leo was born with a rare genetic condition, called Epidermolysis Bullosa (EB). Leo’s type of EB, recessive dystrophic EB (RDEB) has an occurrence of approximately one out of a million. People who have EB are missing a protein that binds the layers of the skin together.

What this means for Leo, is that his skin is very fragile and will blister or tear with even slight friction. In order to keep him healthy and safe, and to allow him to play and explore the world like other kids his age, Leo wears special bandages over his body at all times. These bandages protect his fragile skin from becoming damaged and help his wounds heal. EB also affects internal connective tissues and Leo has a g-tube that is the primary source of the nutrition he needs to heal and grow.

Despite these challenges, Leo is one of the happiest kids you’ll ever meet! He loves to run, jump, play and make new friends. He is brave, strong and resilient, and does not let his condition stop him from doing the things he wants to do, sometimes we just have to do them a little bit differently.

There’s currently no cure for EB, but there are promising treatments currently in clinical trials. We are hopeful that the near future will bring the cure that we so desperately need. For more information about EB, please visit, or to donate to fund research for lifesaving treatments, you may visit (EB Research Partnership )

Thank you for reading our story and supporting Leo and his families!

You can also follow along with Leo’s journey on Facebook - Brave Little Lion: Leo's Life

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