Fighting to save a child known as Jo Jo

Rebecca Heuer shares a private moment with her daughter, Billie Jo, or Jo Jo for short. The three year old is fighting a rare genetic disorder that has impaired her ability to walk while her mother is trying to cut through the government bureaucracy that is interfering with her child's ability to receive needed medical care.

Her name is Billie Jo, but the three year old remains adamant about going by her nickname, Jo Jo. A shy child with soft, blonde hair and chocolate brown eyes with a fondness for Disney princesses, she's been known to argue with anyone that tries calling her by her given name.

Ever since she was a baby, Jo Jo was one that always seemed happy. Wary around strangers and those she doesn't immediately recognize, that shyness tends to wear off fairly quickly with her personality capable of stealing people's hearts.

But that's how people see Jo Jo when she's out and about with her family. In the early evening hours as most people are starting to relax, her quiet demeanor can quickly change.

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