A Viking Invasion In Hillsboro

One of the best parts of our job is that it occasionally offers us with an opportunity to do something really cool and give Grace another "once in a lifetime" experience. Like when we got to meet the North Dakota State men's basketball team, who has become a welcome part of Team Grace over the last few months.

On Thursday, Jan. 14, another one of these opportunities presented itself. It started with a call to the paper from someone who said that they had a family member who played in the NFL and was in Litchfield visiting his grandma. I gave Kristy Sanders a call back and she explained the situation a little more.

She explained that her great nephew, Zac Kerin, had played for the Minnesota Vikings practice squad last season, but had made the big club this season. To be perfectly honest, you can count the number of NFL game's I've seen this season on one hand, with plenty of fingers to spare, so I had to do a quick Google search to see if she was pulling my leg.

She wasn't. Zac had played his college ball for Toledo and made it into four games for the Vikings this year on the offensive line, probably another reason I'd never heard of the young man because that position doesn't get a whole lot of publicity unless something goes wrong.

As I looked up Zac's bio, Kristy told me that he was in town visiting his grandmother, Janis Wise, and that Zac's dad, Todd, had grown up in Litchfield and was an LHS graduate. That was more than enough for me to be interested in doing a picture for the paper. Mary's grandma and grandpa set a standard that when people call, we go and we proudly carry on that tradition today. Plus, it's not everyday that an NFL player finds his way to Montgomery County. Kristy told me that the family was planning on meeting at the Moonlight Y in Hillsboro that night and asked if I'd be willing to come over and take a photo. I said I'd be glad to and the deal was done.

My mind went to the possibility of bringing Mary and Grace along for the assignment, hoping in large part to get dinner out of the deal. We've been trying to eat at home more to save our money and waistline, but I thought I could coax Mary with the Y's garlic dressing, which is one of her favorites.

I also hoped that the possibility would arise that I could introduce Grace to Zac. One of our goals this year is to raise INAD awareness and to continue giving Grace as many unique life experiences as possible. It's for a special cause, so I'm only slightly ashamed that I was willing to use my position at the paper to indirectly benefit my family.

I was a little nervous as we made our way to the Y, worrying that Zac wouldn't want to be bothered with some small town newspaper guy, let alone his wife and daughter. I promised myself that I would only talk to him about Grace if it felt right.

We were met at the door by Kristy, who said she felt like she knew us through the stories about Grace in the paper. Grace even gave her a big smile when Kristy mentioned how pretty Grace looked, something that never fails to bring a grin to my little girl's face.

After that, she introduced us to Zac, who seemed a little embarrassed about all the attention he was getting, but couldn't have been nicer. I took a nice photo of he and his grandmother, that will run in The Journal-News soon with a little bit of info about Litchfield's shoestring connection to the NFL.

As we talked with Zac a little more, I seized the opportunity to bring up Grace. Again he was gracious and seemed to be interested in Grace's story and our journey. I asked him if I could take a quick photo of him with Mary and Grace, which he agreed to, and we gave him a gracelet to remember Grace by. He said that he would hang it from the rear view mirror of his truck, since he had previously tried to wear a similar bracelet in honor of a friend, but had it snap due to the fact that his wrists are bigger than most people's biceps.

After the pictures, we thanked Zac for his time and Kristy for giving us a call. It very well could break Grandpa John's green and gold heart, but we will be rooting for the Vikings when next year's NFL season begins. I know the opportunity probably wasn't a big deal for Zac, who was about as humble as you can get, but the chance to meet a NFL player in our hometown is the kind of experience that you can't buy and what our Grace-Filled Journey is all about.

Mary, Grace and our newest friend on our Grace-Filled Journey, Zac Kerin of the Minnesota Vikings.

KRH

Never Give Up

In July of 2012, Mary, Grace and I went on one of first family vacations with just the three of us. With some discounts from the paper, we headed down to Branson, which had been one of my favorite family vacation destinations as a kid. 

We had a great time during the trip. We swam. We played putt-putt. We went shopping. And of course, we went to Silver Dollar City.

It was Mary's first time at the Ozark Mecca, but I'd probably been there 10 times in my youth. It was always a favorite of our family, so that's where we went for a lot of our vacations when I was growing up.

We hit several of my old favorites like the glass blowing demonstration, the candle dipping place and the Tater Patch, which mixes up a little piece of heaven called calico potatoes in a six-foot wide skillet.

My favorite part of the trip we found totally by accident. The Wallenda Family Circus was just finishing up their run at one of the theaters inside Silver Dollar City.

We had just seen a special on Nik Wallenda a month or so before and had watched him walk over Niagra Falls on a tight rope on TV so we were pretty stoked to see him perform. Plus the theatre was air conditioned and our 10-month-old princess was getting cranky.

The show was awesome, but the coolest part was getting to meet Nik after the show. We bought a picture of his famous walk over the falls and got an awesome photo of Mary and Grace with him. 

Just before we left, Nik signed the photo, making out the inscription to Grace. As we got back home, we put the photo in our spare bedroom, with promises of hanging it up soon.

I had pretty much forgot about it until a few months ago when I came across it while looking for something else.

As I read the inscription, I was floored. There in perfectly preserved black Sharpie was the following "Grace, Never Give Up! Nik Wallenda"

This was written when Grace was a perfectly normal little girl. There were no delays. There were no questions. There was no INAD.

But almost three years later, INAD is our reality. We continue to hold out hope for a miracle, for a cure or a treatment for this awful disease.

Since rediscovering the photo it has been perched on a shelf above Grace's bed. Nik Wallenda's words serve as a reminder to me to never give up regardless what stands in our way, whether it be a thousands of gallons of rushing water underneath a perilously thin wire or a rare and deadly genetic disease.

Mr. Wallenda will undoubtedly do more remarkable things in his career, but as far as I'm concerned, his words to Grace are the most remarkable thing he's ever done. Even if he doesn't know it.

The Beginning Of A Grace Filled Journey

I think the things that we remember most about our lives are the moments that change it, for better or for worse. Graduations, marriages, births, deaths. Some good, some bad, some that fall in the gray areas in between.

For me, one of those moments was on Sept. 7, 2011, the day Grace Louise Herschelman entered my beautiful wife Mary and I's life kicking and screaming. Granted, if you were being yanked out of your slumber by a pair of guys in masks wielding surgical equipment you'd probably yell too.

Almost every moment since then has been memorable in one  way or another. On the outside, Mary and I may have looked like we had this parenting thing down, although the reality of the situation was far from that. 

We relied heavily on our parents for advice, support and free babysitting, all of which they gave willingly. We relied on each other when we were at our wits end and didn't know which way was up and which way to turn. And we relied on God. Asking him if we were doing ok as parents and praying for Grace in both the present and future.

Things would get a little more complicated not long after Grace's first birthday. Our moms, independently of one another, noticed that one of Grace's eyes was wandering a bit, so we spoke to our doctor about it and got set up with an pediatric ophthalmologist.

Around that same time, we started to notice that Grace wasn't quite hitting all of her milestones, like walking, number of words spoken and some other skills that we never really thought about.

That set us off on the journey through the state's Early Intervention program, starting with occupational therapy, then adding physical, speech and developmental therapy at different times along the way.

In general it was a taxing, but positive experience and at different times Grace seemed to be making strides. During this whole time, we were still confident that our little girl would walk, talk, run, take over the world and anything else she wanted to do someday.

In addition to the therapies, we also started seeing specialists at St. Louis Children's Hospital - first in orthopedics to get Grace fitted for some braces that her PTs recommended, then in neurology and genetics to try to find out what was causing the delays.

A year ago, a little bit of the wind was taken out of our sails as an MRI showed that Grace's cerebellum was a little bit smaller than that of children her age. The neurologist told us that was what was causing the issues with balance and walking, but it was really more of a symptom than a disease.

In July of this year, we underwent something called "whole exome sequencing" which looks at all 20,000 genes, even though they only know what about 6,000 do. This test would either tell us, what was wrong and how we could fix it, what was wrong and that there was no known fix, or that they still had no idea what was wrong. And it would take almost six agonizing months to come back with the results.

We hardly waited with baited breath. I fully expected that the answer would be inconclusive and that we would still be stuck in neutral on what was causing the delays. In the meantime, Grace had aged out of Early Intervention, but still did physical therapy in Hillsboro at RehabEdge and in Springfield at Kids at Koke Mill, plus speech therapy at Hillsboro Area Hospital.

Everything had pretty much been normal, with a string of doctors appointments and therapy sessions. Grace's progression seemed to slow slightly, but we chalked that up a delay in getting her new leg braces after she outgrew the last pair.

Then on Thursday, Nov. 13, the genetic testing came back with an answer.

As Mary and I sat in the back office at work, we listened to the solemn voice of our genetic counselor tell us that they believed that they had found the problem gene.

It seems that we had each passed on a recessive mutated gene to Grace and that the gene was responsible for depositing iron on Grace's brain. She said that the genetic disorder, which is lumped in a group called INAD (infantile neuraxonal dystrophy) was responsible for such things as slowing of growth and development, slower language development and eye issues, among others. The disease is neurodegenerative and loss of muscle strength and movement continues over time.

And then the nuclear bomb.

"Most children that have this condition don't make it to their second decade."

Just like that, the world seemed to fall apart. How could this bright, smiling, happy little girl all of the sudden receive the equivalent of a death sentence before she even spent her first day in kindergarten?

We learned more about the condition the following day when we met with our genetic counselor and neurologist at Children's. I believe that doctors are taught to prepare people for the worst case scenario, and while they did that, they did a good job of treating us like human beings who just had the rug pulled out from under them in one of the worst possible ways.

The last month or so have been pretty much a blur. We've spent a lot of time with family and friends, telling a few people at a time.

We've prayed a lot as well, mostly for miracles, no matter how slim the chance. They say that having the condition is a one in a million chance, but they tell us that there are only 10 documented cases of what Grace has in the US, so it's really more like one in 30 million, give or take.

Our hesitation to tell people has been in part with our own struggles to grasp the news and in part the fact that this isn't going to be a short term thing. Pneumonia is now our worst enemy, not the disorder, which will weaken the muscles and make it harder to make sure everything goes down the right pipe.

Those that we have told have been extremely supportive. For some reason, people just gravitate to Grace. There are more people in our lives that love that little girl than I can possibly fathom. And we need every one of them. 

We are not relying on a miracle (we continue to go to therapy and work to keep Grace as strong as possible every day), but we continue to pray for one every day. But if that never comes, we plan to never take another day with Grace for granted. It's easy to tell yourself that each day could be your last, but I never actually felt the importance of every second until this news.

Whether I have eight years, eight days or eight decades left with Grace, I plan to make the most of it. Every second I spend with her is life changing. And I'll never forget that.

~ ~ ~

For more information on INAD and similar disorders, visit www.nbiadisorders.org or http://nbiacure.org/learn/nbia-disorders/plan/inad/

KRH