Boy born with rare disorder beats odds

Boy born with rare disorder beats odds
Family

POSTED: Wednesday, July 11, 2012 - 9:30am

UPDATED: Wednesday, July 11, 2012 - 9:34am

A Plant City boy is beating the odds nearly three years after being born with a rare disorder that affects less than 1,500 people throughout the world.

When Lakota Lockhart was born, his mother could hear him crying and the nurses saying, "Breathe baby, come on, take another breath."

After surviving his birth, doctors quickly discovered Lakota could literally die if he fell asleep; he would simply stop breathing.

With a diagnosis of Central Congenital Hypoventilation Syndrome, or CCHS, Lakota suffered from a disorder of the central nervous system that stops a person from breathing.

In the weeks to come, doctors at Tampa's St. Joseph's Hospital would keep the boy intubated, placing a tube in his wind tunnel to help him breathe, and monitor his every move. Even when he was awake, doctors were forced to keep him on a ventilator.

Three weeks later, doctors gave Lockhart's mother, Krystal, a diagnosis for his deadly condition, along with the choice no parent ever wants to make: Do you want to take Lakota off life support?

"You have the option," Lockhart remembered the doctors telling her. "Nobody wants to have to make that decision, especially if it's your child."

The doctors gave Lockhart the option because they had no idea if Lakota would even be able to function properly and were unsure about his physical and mental capacity.

After weighing her options -- life or death -- Lockhart made a decision.

"There was something, there was a spark in his eye," she recalled. "There was something there that let me know that he was going to make it."

Lockhart said Lakota just wants to be loved and accepted for who he is. Later this month, Lakota will celebrate his 3rd birthday.

"I watch him interact with other children and he wants to be accepted just like any other child would," Lockhart said. "He doesn't want to be thought of as being different because of his trach [tube] or because of his syndrome."

A "trach" tube helps improve a patient's oxygen flow when the mouth or upper throat is blocked.

Those living with CCHS hold a conference every three years. The next conference will be held in Orlando in 2014.

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