A Race For Grace

Some walked. Some ran. Some were even pushed in strollers. But everyone had one goal in mind, working together to find a cure for INAD, raising more than $22,000 for research.
This year's second A Grace-Filled Journey 5K and one-mile fun run and walk event drew more than 550 participants of all ages to Hillsboro for the start of the race, with another 150 participating virtually in all 50 states and five foreign countries. The race is held in honor of five-year-old Grace Herschelman of Hillsboro, who was diagnosed with INAD (infantile neuroaxonal dystrophy) in November 2014. All proceeds from the race benefit an ongoing research study at Washington University in St. Louis, MO, with Dr. Paul Kotzbauer.

This year's Grace Race raised $22,000 for INAD research

"This isn't just about running," said John Galer, who coordinates the race with his wife, Emily. "This is about stepping up for those who can't, being their legs and helping to find a cure for INAD."

Everyone had their purple ready to go!

Herschelman is the niece of the Galer couple, who reside in Alexandria, VA.

Many local volunteers help prepare the event as well, including members of the Hillsboro High School National Honor Society.

Hanging out with the Galer side before the race

Prior to the start of the race, Galer welcomed everyone and thanked them for their participation, and Pastor Mike Lawton of the Hillsboro United Methodist Church offered a prayer. Just before runners took off, Dr. Kotzbauer addressed the crowd, talking about his history in INAD research, as well as a new avenue he plans to pursue. Kotzbauer and two members of his lab, Dhruva Dhavale and Rebecca Miller, participated in the race.

Grace's cousin, Keelen, definitely enjoyed the race

Several groups also participated together, including the M&M Multisport Club, the Litchfield High School volleyball team, the Hillsboro High School volleyball team and the Fillmore United Methodist Church.

New Grace swag

Following the finish of the race, kids of all ages enjoyed a variety of free family friendly activities, including a petting zoo with the Hillsboro High School FFA, face painting with the Hillsboro High School Art Club, balloon animals with Professor Longhair, kids activities and a bounce house with the Hillsboro Area Hospital Junior Board, snowcones by Joe Snow from Noko and a chance to meet Ronald McDonald, courtesy of McGraw Enterprises.

The Hillsboro High School volleyball team

The Litchfield High School volleyball team

Members of the Hillsboro Sertoma Club also grilled pork patties for lunch, and two of Herschelman's friends, Hazel Holshouser and Dahlia Maass, sold Krispy Kreme donuts to raise money for research.

Hazel sold out of donuts!

"What an awesome way for our community to come together," said Grace's mom, Mary Herschelman. "We are so humbled and honored by those who joined us here and participated all over the world."

Some of our favorite friends came to the race

In addition to having participation in all 50 states, several people joined the cause internationally. Raymond native Kylie Walsh participated in Bangkok, Thailand, while another former Lincolnwood High School alumnus Zeb Hoffman and his wife, Naomi participated in England. Sam Clark, whose son Caleb is affected by INAD, participated in Australia, while Farmersville native and current Marine Konner Nimmo joined the fun in Japan, with several of his fellow Marines. A group from Hillsboro, including Ralph and Anne McLaughlin, Mike and Cheryl Whitten and Gene and Mary Dickenson, participated in Alberta, Canada, while on a bus trip.

Our friend, Konner, and his fellow Marines did the Grace Race in Japan.

"We completed it in Nebraska," said Laura Wagahoff, originally from Raymond. "We are so thankful today for the chance to do this with our family today, and encourage our girls to keep going because we love Grace. We are so thankful to teach the girls a few life lessons, compassion and to keep going because Grace isn't able to walk or ride a bike right now, so we want to do it for her."

Infantile neuraxonal dystrophy is an extremely rare genetic disorder that affects the nervous system. There are around 50 known cases worldwide, and children with INAD lose the ability to walk and talk. Many do not live to see their tenth birthday.
To learn more about Grace's story, visit them online at www.agracefilledjourney.com or find her pages on Facebook and Twitter.

"To everyone who had a part in making this day a huge success, we will forever be grateful," said Mary Herschelman. "We love you all."

mlh

School Days

For the past two and a half weeks, I've walked Grace to her class at Beckemeyer Elementary School, charting the same route I walked as a youngster.

Yes, this year, Grace made the transition from preschool at our church to kindergarten at the public elementary school.  Kyle and I did a lot of talking about the prospect of kindergarten over the last few years. Grace had a wonderful experience in preschool, going just a couple of hours each morning for three days a week.

All smiles for the first day of school

We knew Grace wouldn't be able to make it an entire day for kindergarten. She would just get too tired. And one of us would have to go to feed her lunch if she had been there all day.  We have also worried a bit about illnesses in the school, and Grace's susceptibility to them. So, there were lots of reasons not to send her to kindergarten. But the more we talked, the more we knew it was something we wanted her to experience.

One of the things we have loved about her time in preschool was the interaction she has with the kids.  I have worried myself silly that no one would want to be around Grace because she's different, because she can't run on the playground with them or respond to their questions. But I'm constantly amazed at how much these kids love Grace. It actually makes me believe in the future of our world with kids like these taking charge someday.

Meeting her special aide, Miss Anne

We finally decided on two hours a day four days a week. Since Grace goes to physical therapy in Springfield on Fridays, we opted not to send her to school that afternoon because she would be too tired.  I had actually hoped that mornings would be a good fit, but we found out that Grace would have the most interaction with her classmates in the afternoon.  Since she still gets speech therapy and physical therapy outside of school, I wasn't worried about her getting those services during school.  Our hope was to provide Grace a chance to see other kids, which she seems to really love.  In fact, when I took her to school one day this week, a little boy named Paxton came right over to her as soon as we got in the room to greet her. Grace gave him a big smile, and it just warmed my heart.

Grace with her aide and teacher, Mrs. Paden

Even though we don't really know how much Grace understands, we try to give her as many "normal" experiences as possible.  Mom and I took her shopping for her school supplies, and tried to pick out things that a five-year-old girl might choose. I have always loved school and office supplies, so I picked lots of fun things in bright colors and a brand-new Frozen backpack that says "Make Your Own Magic." I liked it better than the one with the rainbow colored poop emoji, but it's hard telling which one Grace might have preferred.

Meeting the new kids in her class

Then, Kyle and I went to parent orientation night the week school started.  I hadn't really planned on going since we had already had Grace's IEP meeting, and we kind of knew where things stood. But Kyle felt it was our responsibility as kindergarten parents to go, and I'm glad that he talked me into it.  It was fun to meet the other parents in her class and see her room.  I did have a little bit of trouble as Grace's teacher talked about all the things the kids would learn that year, and that some of them would even start reading.  Kyle knew I was having some trouble, and he just reached over and squeezed my leg, just to let me know it would be okay.  Sometimes I just need a reminder to celebrate Grace's accomplishments, even if they aren't the same as other kids.

Grace and Charley after her very first day of school

Even though we had already met with her teacher, her aide, the school therapists and special education teacher, I still found myself nervous before taking her to school that first day.  But it didn't take long for me to realize this would be a great experience for Grace too.  All four of us walked Grace to school the first day, and her teacher immediately brought all the students in her classroom one at a time to meet Grace.  I think Grace had a smile for all of them.  We left, knowing she was in good hands, and in for a special treat.

School is hard work!!

In the days since then, Grace has enjoyed reading books and listening to music at school. She loves seeing her friends, and the puppets in her classroom. Each of the kids has a picture on the hallway before the classroom, and Grace even has one of her own.  

Grace's first kindergarten art project

Even though Grace's kindergarten experience will be different than most kids, we're still excited for the book orders and classroom parties, and just letting Grace enjoy her own school experience.

Grace just loves hanging out at kindergarten!

So, when you see us walking home from school, make sure to stop and ask Grace how her day was, you'll probably get a big smile.

mlh

Grateful For Our Little Village

I've always liked the African proverb, "it takes a village to raise a child," but I really didn't know how true it was until we welcomed Grace into our family nearly six years ago.  Since then, our little village has shown us such love and support in our quest to #beatINAD.

As we count down the days to the second A Grace-Filled Journey 5K and one-mile fun run and walk, I think about all the people who have stepped up to join our little village time and time again.  Our last race drew over 700 participants in more than 20 states and several foreign countries, raising $25,000 for INAD research at Washington University in St. Louis, MO.

Celebrating that we got to color our whole map purple!

This year, while we want to continue to raise fundraising dollars for Dr. Paul Kotzbauer's work, we also want to continue to raise awareness. With only 50 known cases worldwide, we don't want INAD to be something that falls through the cracks. We want to keep telling everyone we meet why we will never give up our fight.

I now own more than a dozen (probably closer to two dozen) different Grace T-shirts, and I wear them all on a regular basis.  Last month, I was wearing my purple Volley for Grace shirt that said "Beat INAD" at the top. A salesclerk in a store stopped to ask me what INAD stood for. Her name was Dani, and she said that her brother often called her INAD, since it was her name backward, and she had never seen it before. I told her a little bit about our story, and before I knew it, she became one of our followers on Facebook. 

Something as simple as wearing a shirt helps to raise awareness each and every day, and I can't tell you what it means to us when we see people out and about wearing a Grace shirt or a gracelet, and knowing that someone is thinking of us and remembering Grace in their prayers.

As we started to make plans for this year's race, I got the idea that it might be fun to try and see if we could get participants in all 50 states. Two years ago, we got nearly halfway there, without really even trying. I shared the idea with Kyle, Johnny and Emily, who all thought it would be a great way to raise more awareness. When the online registration officially opened, we made a very large map of the United States, and colored states purple as they got signed up for the race. We also made weekly update videos, giving progress of our goal.

Virtual packets ready to be mailed out

The first weekend of August, we filmed the video at my alma mater, the University of Missouri in Columbia with 25 states to go. I have to admit I was a little skeptical that we would be able to pull off finding someone to join us from all 50 states, especially since we had so many left in the northeastern part of the country. 

But never one to back down from a challenge, we continued our search, humbled as people we didn't even know began to share our posts, tagging friends and family they knew in other states. One by one, we began to whittle down the list, leaving only Vermont as the last holdout.  I can't tell you how many people would send me messages to tell me they asked friends in this state or that state, and the excitement truly began to grow. We even managed to pick up a runner in Vermont.

Race packets!

So, here we are, with less than one week until this year's fundraiser. More than 500 from all over the country, and in five foreign countries (Japan, Thailand, Canada, England and Australia) will be walking or running on Saturday to raise awareness for INAD. We are so incredibly humbled that our little village continues to step up to the plate and join our Grace-Filled Journey.

Six years ago, I never knew what kind of village it would take to raise Grace, but I can't think of a better place than Montgomery County to call home.

mlh