Boy With Rare Disease Has Remarkable Year
INDIANAPOLIS — A year ago, Jordan McLinn became the youngest firefighter in America.
But what his mother thought would be a quick cameo at the Indianapolis Fire Department turned into a year-long adventure that shows no signs of letting up.
“I just can’t believe it. It’s like every day brings something new,” said Laura McLinn. “These things just keep happening for him.”
It all started with a letter Laura wrote to IFD last December, asking the fire chief to help her fulfill a wish for her 5-year-old son. The letter explained Jordan had always dreamed of being a firefighter, and that he doesn’t have as long as most kids to achieve his dream.
“Jordan was diagnosed almost two years ago with Duchenne Muscular Dystrophy, so we went from one day thinking he’s doing really good and the next day we get this fatal diagnosis,” his mother explained in the letter.
Jordan’s disease is deadly. It attacks his muscles, and doctors say little boys like Jordan usually do not live past age 20.
IFD responded to the touching letter in a big way.
On Christmas Eve, Jordan got a job interview at Fire Station 13.
The next morning, Jordan received a letter in his Christmas stocking, offering him an honorary position as an IFD firefighter and inviting him to a day of training at the fire station.
But with all the excitement, the McLinns are also dealing with reality.
“With Duchenne Muscular Dystrophy, around 6 or 7 is when they start to decline. We’re already seeing that with him. He’s already getting weaker, a little more tired. So time is ticking,” Laura told WTHR on Dec. 25, exactly one year after first sharing Jordan’s story.
That’s why Jordan’s next adventure will be a January trip to Washington, D.C., where he and his mom will testify before the Food and Drug Administration.
“This is a really big deal. There is a drug that is possibly going to be approved by the end of February for Duchenne Muscular Dystrophy. We have real, tangible hope that he’s going to receive treatment that could add decades to his life,” she said.
The drug is already in trial stages in Europe, showing tremendous promise. A similar trial will begin in the Unites States early next year, and Jordan could qualify for that trial when he turns seven in the spring.
As the McLinns look back on a remarkable year, they eagerly anticipate what might lie ahead in 2016.
To see more about Jordan’s adventures as a firefighter, see WTHR’s story.
Source: WTHR