It took almost 16 years for a diagnosis to be reached. Until then, the doctors just called it “Addi Syndrome.” With only 20 known cases in the world of TRAF7 Syndrome, there are far more questions than answers. Especially since she’s never seen her doctor in person — he’s in Paris, France. Addi may be mostly non-verbal, but she definitely can communicate what she wants.
“I think Addi would love the chance to play catch with you,” her mom said in an email. “She absolutely loves t-ball.”
Addi not only plays t-ball, she also bowls and loves to swim in the pool. And she’ll ride anything they’ll let her at Silver Dollar City.
Once the sun broke through the clouds, we met at Nathanael Greene Park near Addi’s favorite merry-go-round.
“Addi would love to have this merry-go-round at home.”
She greeted me with a handful of t-ball medals, a handshake, and a smile.
Wearing holiday appropriate leggings and bow in her hair, Addi perfectly matched the green in my West Virginia Miners hoodie (the only green I own).
Addi borrowed a glove and we tossed the ball for quite a while, until she took off the glove and started throwing even better with her other hand. It never even occurred to me that she might be a southpaw.
“She’s pretty much ambidextrous,” her mom said.
Addi plays t-ball through A Sporting Chance at Meador Field; I told her I’d find a way to come cheer her on at a game this summer. It feels appropriate to try and capture today’s game of catch in a poem.
She throws with smiles
and squeals
and both hands
a music-loving miracle
bravely living
the unknown of each day
with hope
and contagious joy
