Xavier Byrd wasn't able to walk, see well, or even talk due to the rare degenerative Schinzel-Giedion Syndrome.
Doctors told his family that the average life span is about two years for patients. Xavier lived to be almost nine.
He passed away in January.
"There's no manual that says 'How do you grieve, how do you mourn,'" said his mother Adrianne Woods. "If he was here we'd have a party."
March 13 would have been Xavier's ninth birthday. His family is celebrating by donating shoes to kids at PACT; the only medical childcare center in the Baltimore area.
Shoes connected Xavier to others in a special way, according to his family. He wore bright, colorful shoes everyday. Shoes were "his thing."
"Everyone else would run up to him and want to see what he was wearing," said his father Anthony Byrd.
Staff members at PACT would notice it when Xavier spent his younger years at the facility.
"It really brought people to him," said PACT program director Sharon Holloway. "To have that colorful presence and uniqueness brought people right on over to him."
Now, Xavier's family has started a new program called "Kicks for X." They are giving away hundreds of shoes to children currently with PACT. They say it's not just about the shoes, but about finding joy under tough circumstances. Xavier found a way to do that each day of his life.
"Life is too short," said Woods. "You have to live life to the fullest, make your own memories and just go for it."
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