ressed in a specially fitted firefighter coat, hat and pants, Bargersville’s newest firefighter reported to work early.
Jordan McLinn toured the fire station with chief Jason Ramey, looking up at wonder at the other firefighters on duty that afternoon. He climbed inside the ladder trucks, strapped himself into the seat and pretended to drive.
Outside the fire station, the 5-year-old learned how firefighters connect a fire hose to a hydrant. He then got to hold the nozzle with another firefighter when the water was turned on.
Jordan has dreamed for all of his short life about being a firefighter. Diagnosed with a rare and fatal form of muscular dystrophy, he likely will not live long enough to become a professional fireman as an adult. So his parents have teamed with fire departments in Johnson County and Indianapolis to make his wish come true.
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He has become a regional star, appearing on news broadcasts, in front of the Indiana legislature and on the field at Indianapolis Colts’ games.
But in his southside Indianapolis home, he’s still a shy little boy.
When he talks about being a firefighter, though, his face lights up. He said his favorite part of being a firefighter is being on the ladder trucks, and he loved walking the German shepherd arson dog around downtown Indianapolis
“It’s been good,” he said.
Jordan was diagnosed in 2013 with Duchenne muscular dystrophy. His parents, Laura and Jeff McLinn, were concerned that he wasn’t growing as much as a 4-year-old should and took him to a doctor.
Tests revealed that his liver enzymes were elevated, but doctors couldn’t determine what, if anything, was wrong. The only progress came when a gastroenterologist at Riley Hospital for Children at Indiana University Health, Dr. Molly Bozic, suggested running a creatine kinase test.
The test is used to detect muscle inflammation. Jordan’s tests showed that creatine kinase, an enzyme that is released into the blood when there is muscle damage, was highly elevated, and the family was quickly sent to a neurologist.
Observations showed that Jordan took steps in a strange way, an early indicator of Duchenne.
The insidiousness of the disease is that due to a mutation in the dystrophin gene, the body stops making the protein that holds muscles together.
Over time, all of the muscles degenerate. Finally, the disease causes breathing complications and destroys the heart.
“By ages 8 to 12, most of the boys are in wheelchairs. The lifespan is usually only about 20 years old,” Laura McLinn said.
The disease is genetic and linked to the X chromosome. It is only diagnosed in boys, affecting 1 in 3,500 in the U.S.
Jordan takes a steroid called deflazacort to keep his body strong. He started the regimen almost immediately after being diagnosed to preserve his muscles for as long as possible.
“There is nothing else for it, absolutely nothing to treat it,” Laura McLinn said.
For now, Jordan is still healthy and active. So his mother decided that he should have the opportunities now that he might never get as an adult.
Laura McLinn wrote a letter explaining who she was, who Jordan was and that he wanted to be a firefighter. She dropped it off at the firehouse near their home.
She created a résumé for Jordan, which listed qualifications such as “I am strong,” “I love God,” “I love helping people” and “I am super smart.”
“I just wanted to see if they’d give him a job. I wanted a station to take him in, let him come in once a week and feed the dog, cut up strawberries for lunch, something really simple just so he could feel like a fireman,” she said.
Initially, nothing happened with the letter. But Laura McLinn tried again in late November, sending the letter to Indianapolis Fire Department Chief Ernest Malone.
She also mentioned it on her Facebook page. Within hours, it went viral.
“I had people all over the country tagging it and responding to it,” Laura McLinn said.
The first person to call the McLinns was Ramey at the Bargersville Fire Department. He invited Jordan and his family to come to the fire station, where he met Ramey and toured the station.
Bargersville arranged to bring him in for an official interview, and he spent a full day training. Jordan rode on the ladder truck, helped make the firemen on duty lunch and did rope training with the team.
“We help people all the time; that’s the basis of what we do. But a lot of times when we’re doing that, it’s at the most horrible crisis of a person’s life. When we get the chance to help someone with something that’s planned and positive, we jumped on that,” Ramey said. “A lot of things about his story touched me personally.”
The Indianapolis Fire Department also brought him in for an interview.
On Christmas morning, Jordan opened up two letters offering jobs to be a fireman. Representatives from Station 34 in Indianapolis came to the McLinn house, presented him with a toy ladder truck and offered to have Jordan come to the station on a regular basis.
Since that time, he has been a regular visitor to firehouses around the area. He went with the Bargersville Fire Department to help with ice rescue training, working with the firefighters to pull ropes during a simulated rescue.
Ramey took him up in the department’s ladder truck, even allowing him to use the controls to raise it up and down.
“He livens the place up. Jordan is so enthusiastic as a child, and I really think we get more out of it than he does,” Ramey said. “He’s such a fun guy to have here.”
Jordan learned some simple German commands while walking the Indianapolis Fire Department’s arson dog. Every few weeks, Jordan visits Station 34 to talk to the firefighters, watch TV and work out with the guys in the weight room.
“They’re helping me do physical therapy with him. The other day, he got to wash the fire trucks. It’s just really cool to see,” Laura McLinn said.
Jordan is going to have the opportunity to ride in a helicopter through LifeLine. The Department of Homeland Security has made Jordan an honorary member of the bomb squad and let him control one of the bomb-disabling robots.
This May, the McLinns will be traveling to Charlotte, North Carolina, to take part in NASCAR’s Coca-Cola 600. Jordan will get to work with the firefighters and paramedics at the race.
“It’s like every other day, I’m getting some offer for Jordan to do something,” Laura McLinn said. “It’s like a never-ending Christmas.”
To see her son living out one of his dreams is an incredible experience, Laura McLinn said. But the real value in Jordan’s sudden fame has been the chance to teach people about Duchenne and put a face to the disease.
He’s become the face of an effort to change the way people with terminal diseases receive emerging treatments.
For the first time ever, a drug has been developed to help patients with Duchenne muscular dystrophy. Though not a cure for the disease, initial trials show that it could extend the life of patients by 50 years or more.
Medications and drugs need to complete three phases of trials with the Food and Drug Administration before they can be released to the public, which can take years.
“When you have a fatal disease, it’s a little bit of a different story. If you’re willing to take the risk, you should be allowed,” Laura McLinn said.
Current regulations state that patients can sign up to take these drugs as part of the trial once it reaches the first phase. The only problem is, patients have to be at least 7 years old to take part.
“Our doctor has told us that the earlier they get this, the better. They can’t get back what they’ve lost, even once they start taking it,” Laura McLinn said. “Just to be able to get access to it would be incredible.”
But so-called “Right to Try” laws are being introduced in states across the country, including Indiana. The laws would allow individual states to help people who are diagnosed with a fatal condition be exempt from some of the more stringent regulations involving drug trials.
Jordan has spent time with the Indiana General Assembly, lobbying to lawmakers and speaking in front of committees about who he is and how the bill would help him.
The bill was passed by the House of Representatives unanimously Feb. 10 and is now before the Senate.
The bill was heard in a Senate committee on Wednesday morning, and members could vote on it next week.
“I’ve been praying very earnestly about how to use this attention to raise awareness,” Laura McLinn said. “This fell right in my lap, something tangible where I can tell people what they can do to help people like Jordan.”
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Duchenne muscular dystrophy
What is it?
A genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy.
What causes it?
It is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between ages 3 and 5.
What are the symptoms?
Muscle weakness can begin as early as age 3, first affecting the muscles of the hips, pelvic area, thighs and shoulders, and later the skeletal muscles in the arms, legs and trunk. The calves often are enlarged. By the early teens, the heart and respiratory muscles also are affected.
Who does it affect?
The disease primarily affects boys, but in rare cases it can affect girls.
How common is it?
Duchenne muscular dystrophy affects 1 in every 3,500 boys.
What is the prognosis?
Until relatively recently, boys with the disease usually did not survive much beyond their teen years. Thanks to advances in cardiac and respiratory care, life expectancy is increasing. Survival into the early 30s is becoming more common.
— Information from the Muscular Dystrophy Association
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Jordan McLinn
Age: 5 1/2
Home: Southside Indianapolis
Parents: Laura and Jeff McLinn
Occupation: Firefighter assistant with Bargersville and Indianapolis fire departments
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Jordan McLinn and his family are taking part in the 2015 Muscular Dystrophy Association Muscle Walk, an event which raises money for muscular dystrophy research, support services for patients and advocacy for victims and their families.
Team name: Team Jordan — Fired Up for a Future
Walk date: 10 a.m. May 16
Where: White River State Park
How to donate: Go to walk.mda.org and search for Team Jordan
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