Michael Huetsch has worked as a volunteer at St. Louis Children’s Hospital for the last three years.  He grew up Columbia, IL, and earned a degree in accounting from SIUE in December 2012.  But after his experience as a volunteer, primarily in the school room at Children’s, he decided to change courses and pursue his master’s in healthcare administration, focusing on quality of patient care.  He will begin taking classes at St. Louis University this Fall.  He attributes his passion for pediatric healthcare to kids like Madison Taliaferro, a 12-year-old cystic fibrosis patient who, on November 5th, 2012, had a double lung transplant. She was recently featured on The Frontline for Hope

I always tell people I have no idea how I got started volunteering.  I was just trying to find something to do to get involved in the community.  I’d really never been around hospitals or kids too much, but something inside me was telling me it was a good idea.

The first day I saw Madison, she was in the back of the schoolroom.  She was squiggling around on one of the chairs.  She had her nerd glasses on, and a nerd book she was reading.  I thought right away, I’m going to like this girl.  The following weeks after that, I made it a point to work with her.

madison1She’d come in most weeks wearing a brand new t-shirt that had a mustache on it and some saying.  I don’t know where that came from, but it’s definitely a fad.  And I think she started it.  She’d show me pictures of her dogs, Chloe, Cooper and Sadie.  She’d show me pictures of her pet squirrel she had back home name Simon.  She’d do videos every night to keep up with family back at home, and at the end of the video she’d say if she had a rainbow day or a cloudy day.  More often than not it was a rainbow day.  This girl is just incredible.  She changes the lives of everyone she meets.  And everyone in her family is just amazing, too.

Madison came to school every week, and she just had an incredible attitude. This all despite having 20 to 30 coughing spells during the two-hour period. But she’d always go right back at it, and get right back to her schoolwork.

I really appreciate all that they’ve gone through in their lives, especially the CF kids.  Talking to parents and everything they have to do, and the struggles they have.  Their whole lives – the lung transplant is kind of like the light at the end of the tunnel for them.  Everything gets better after that.

madison2Madison got the call on Sunday night.  She had the transplant on Monday.  I didn’t find out until that Friday.  She had a procedure that day, so I had to wait four or five hours just to see her, and that was really hard.  I went into her room, and she was struggling.  She had a tube in her mouth, and that was really hard to see.  So I read Arthur to her because that was one of my favorite books as a child.  I don’t know if she likes Arthur or not…. But it was nice to be with her.  She’s like my little sister, and to be there with the family and know everything they’ve gone through in their life and to be a part of that is really special.

I try to do my part.  I try to be funny and make the lesson as fun as it can possibly be.  But she’s the kind of kid who opens up your heart.  She’ll just get right in there, and I let her do that.  I guess just having that openness to her, that’s how you truly make a difference in a kid’s life.  That’s how you’re able to truly feel like you’re having an impact in everything they’re going through.  And to be able to do that for someone who is as strong as she is, and still know that you’re making a difference for her and for her family, that’s all I can ever ask for as a volunteer.

You hear every once in awhile that experiences in life change everything about you and everything you want to do.  Just being here the last three years, it’s opened me up to new possibilities of what I can do in my career and continue to help these kids.

It has changed my life, no doubt.  One thing I really admire about her is even before the transplant, she lived breath by breath.  That’s all she could do.  She said it was like breathing through a straw.  After transplant, she kept that same mindset.  She just wanted to stay a kid.  And since she’s gone home, her mom has sent me some pictures of her riding a bike, jumping on a pogo stick and climbing a tree.  She hasn’t changed in that sense.  She still lives in the moment, which is something we can all learn from.  As a student, you’re taught to look into the future and worry about what you do now how it affects your future.  And then you look at Madison, and all she knows is this moment.  All she knows is how to breathe in this moment.  And to learn that from a kid – it’s incredible.  She’s the type of girl I feel is going to change the world.

I think before I met her it was in my mind that I wanted to go into health care.  But she brought that idea to a whole new level.  As a volunteer, nurse, PT or doctor, you’re not here for yourself ever.  And Madison really taught that to me.  You see doctors on the frontline, and you see the miracles that they perform – but these kids in the hospital and their families, they ARE miracles.  And Madison, she’s my miracle.  She’s the type of person I’ll fight for the rest of my life.

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As Madison would say: Peace, Love, Rainbows…Peace Out!