A lifetime of wisdom - about cystic fibrosis

Josh Mogren of Maplewood was just 14 years old when his older sister died from cystic fibrosis - the same disease he was diagnosed with at birth.

The loss of his sister, who was only 16 years old at the time of her death, not only scared Mogren but also caused him to question his purpose in life. His genetic disorder means he has a maximum life expectancy of 37 years, but the loss of his sister was a wake-up call that 37 might never come.

Unsure of where to turn, Mogren began questioning everything from the purpose of finishing school to starting a career and finding someone to love and eventually marry.

"I was 14; I was still trying to figure out who the hell I was and then there's my sister and she dies," Mogren said. "Eventually my friends and my family kind of said, 'we love you, and you have every right to be sad, but you have a lot more stuff to do in your life.' And that kind of kicked me in the butt."

Meet Moganko

That was 19 years ago, and now Mogren can say he took the advice of his friends, family and parents, Christine Meyer and Steve Mogren, to heart.

After graduating from Stillwater High School, Mogren decided to continue his education.

"I finished (college); it took me seven years, but I got my bachelor's degree," he said. "I worked full time for as long as I could and now I'm doing light part-time work, and most of the time I'm a stay-at-home husband and I write a blog, create things with the puppet and speak at cystic fibrosis events around the country when my health allows."

Mogren spends a vast majority of his time deeply involved in the cystic fibrosis community. He has become somewhat of a spokesperson in the community through his blog and videos he makes about cystic fibrosis featuring a puppet named Moganko.

The videos are geared toward children with cystic fibrosis as a way of educating them and encouraging them to follow through with daily therapy and living in a way that is healthiest for them.

"When I was a kid there wasn't a lot out there for kids to learn about cystic fibrosis, and most of it was from a doctor's office with kind of scary medical jargon," Mogren said. "I always wanted to have a Muppet that knew what cystic fibrosis was."

Having once been a child dealing with a serious illness, Mogren has a special place in his heart for children diagnosed with cystic fibrosis. He uses Moganko as a way to connect with these children and show them that living with a disease doesn't have to be scary and debilitating.

Mogren began making the videos mostly for himself, but it didn't take long for them to become popular in the cystic fibrosis community. Now, children from Australia to England and all across the United States have grown to love Moganko and Mogren.

"I know that I've helped thousands of kids across the country. And it works because I make light of it with this puppet, but it also works because I have cystic fibrosis, so I know what these kids are going through, or I have some idea," he said. "Some of these children, even though the life expectancy has grown to 37, there are kids that are dying before they reach their double digits."

'I want people to be inspired'

For most with the disease, cystic fibrosis is a disorder that needs to be dealt with on a daily basis with respiratory therapy to loosen mucus that has built up in the lungs. The disease itself causes thick, sticky mucus to build up in the lungs and digestive tract, causing symptoms from shortness of breath and coughing to nausea, weight loss and other digestive issues.

For Mogren, having cystic fibrosis means undergoing two respiratory therapies each day; each therapy lasting from a half hour to 45 minutes and it loosens and expels mucus with a high frequency chest compression device.

For children with the disease, these therapies can be both tedious and discouraging, and sometimes children put up a fight with their parents when it comes to undergoing therapy or taking any medicines they have been prescribed, Mogren said.

Getting kids to cooperate with therapy is one of Mogren's missions with Moganko and his videos, particularly a few music videos he has done with an a cappella group from the University of Minnesota.

"Kids with a chronic illness are forced to be grownups faster than everybody else," Mogren said. "They're put in situations where they have to have physical pain and frustration. Time gets taken away from them - birthdays and holidays. You tell me that doesn't make you grow up quick, then I don't know what will."

Part of Mogren's mission with Moganko is to help kids retain their youthfulness while they still can. While Mogren's interpretation of Moganko doesn't include the puppet having cystic fibrosis himself, Moganko "lives" with Mogren and has the mindset of about a 7-year-old. He is mischievous and curious just like a child, and he teaches children with the illness how to have a positive mindset in spite of their cystic fibrosis diagnoses.

"I want people to be inspired and to do their own thing. That's just what life is about," Mogren said. "It's about taking what you have and doing the best you can with it, (or) at least trying. We can't control what the disease does, but we can control how we react to it."

Some days Mogren's positive outlook is easier to maintain than others, he admits. Along with his blog and the Moganko videos, he has a very active Facebook page with several friends in the cystic fibrosis community. He said one of his Facebook friends dies almost every week.

Although those deaths are discouraging and sad, Mogren said he tries to worry more about living than about dying.

"We can worry about life, we can worry about dying, or we can take the time that we have and go out and live," he said. "To me, I would be disrespecting everybody that has passed away before me by sitting there and feeling sorry for myself."

This Christmas: harder than most

While each year the anniversary of his sister's death hits hard, Mogren knows he needs to continue meeting his own daily goals to continue to inspire others and to be a source of smiles for children with cystic fibrosis.

"I have to say that yes, my sister died from it, but at the same time let's talk about the fact that we want to live," he said.

"I don't have a life expectancy; I expect to live because I work really hard and I do the best I can every single day."

Amanda Lillie can be reached at alillie@lillienews.com or by calling 651-748-7814.

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