Ainsley's Angels And The Power To Push

"The journey of a thousand miles begins with a single step."

When we embarked on this "Grace-filled journey" last November, it wasn't exactly the journey we hoped to take. But our friends, family and community (both near and far) have been there to join us every step of the way.

Although there aren't many ways we can help Grace, we can raise money to help with research for INAD (infantile neuroaxonal dystrophy). And this community has certainly been generous. We have attended so many fundraisers these past few months, and know that this money will be put to good use at Washington University.

We continue to make plans for "A Grace-Filled Journey" 5K and one-mile race, which will be held on Sept. 5, and hope you will join us as we continue to raise awareness for this terrible disease.
It seems like everywhere I go, someone new tells me they can't wait for the race in September. We will have people from all over the country participate here in Hillsboro and in their own home towns by virtual race. And it's sure to be a really great day.

A few weeks ago, I got a phone call from a friend of mine, Angie Tefteller of Hillsboro. I met Angie several years ago when I was doing a story for Litchfield McDonald's. They were kicking off their annual "Give a Little Love" campaign, and Travis and Angie's son, Dalton, were being featured, as the family had stayed at a Ronald McDonald House.

Grace and Dalton celebrating "superhero" style at Dalton's 16th birthday party.

 In some ways, Dalton's story is similar to Grace's. He was born "normal," but began to regress in his walking skills after he turned a year old. The family is still seeking a diagnosis for his condition, but Dalton definitely doesn't let any of his challenges or limitations slow him down. He's a Special Olympics athlete and medalist, and a multi-year winner of the smile contest at the Illinois State Fair.

Angie called to tell me she had an idea for a fundraiser for the INAD study, and also that she had been following some of the posts we have shared from Ainsley's Angels of America. And she wanted to get a push chair for Dalton so she could run in the 5K event for Grace.

For those who don't know, Ainsley's Angels of America, also has a connection to INAD. Ainsley Rossiter, the 11-year-old daughter of Kim "Rooster" and Lori Rossiter, has also been diagnosed with INAD.

I first learned about Ainsley's Angels of America before we knew Grace had INAD. Last year, my brother, Johnny, pledged to run 1,000 miles for Grace, and during his first marathon, he saw someone pushing a chair with the Ainsley's Angels logo on it. It was striking enough that he went home to look up what it was all about, and we were both inspired by the story.

The mission of Ainsley's Angels of America is to ensure everyone can experience endurance events, while also building awareness about America's special needs community through inclusion in all aspects of life, by promoting awareness, providing education, and participating as active members in local communities. They have chapters all over the country and help support a wide variety of races.

According to their website, when Ainsley went for her first jog during a local road race in 2007, she gave a radiant wind-induced smile that anyone would envy. In an instant, running provided the family with a therapeutic means to fight the devastation associated with learning and trying to live with the fact that sweet Ainsley has a terminal illness. Her smile on the race course, the positive energy surrounding the start line, the other rider athletes and pushers smiling from ear to ear, the togetherness of every member preparing to ‘roll with the wind’, the fearlessness of the athletes, the normalcy of the family, and the love everyone shares is a therapy like no other!"

To date, Ainsley has been the captain of more than 80 races, including five half-marathons, and continues to provide inspiration for runners everywhere.

Dalton and his friend, Mitchell Beck are ready to roll in the Grace 5K this fall.

 When Angie called me, she told me that she had been in contact with Ainsley's Angels of America about the possibility of purchasing a used push chair. She received a response that the group didn't really have any used chairs, but they would be glad to help her set up a fundraising site, so others could help with the expense of a chair for Dalton. She thanked them for their response, but said she would continue her search in other ways, and that she wanted all the fundraising efforts to go to INAD research.

Not long after, she received a message from Rooster Rossiter, asking for her address. She provided it to him and once again asked about used push chairs with no luck.

When she called me, it was to tell me that she returned home from work one day to find a rather large box at their house, and that the Rossiters had made sure Dalton would be able to be a captain in the 5K for Grace this fall.

Angie and I both got a little teary-eyed on the phone, just so grateful for the kindness of family, friends and even strangers.

The Teftellers have already started training for "A Grace-Filled Journey" 5K, and we hope you will too. I promise it's a day you won't forget.

For more information or to sign-up for the race, visit www.facebook.com/GraceFilled5k or stop by The Journal-News office in Hillsboro or Litchfield to pick up a registration form. All proceeds will benefit the INAD study at Washington University.

Because #TogetherWeShall #BeatINAD.

MLH

The Grace Cup

I'd like to think that now I know how farmers feel. All of last week I had one eye on the weather forecast and the other on the clouds as I waited to see if Mother Nature was going to wash away the inaugural Grace Cup on Saturday, June 20.

Team members and coaches from the inaugural Grace Cup.

I'm used to issues with foul weather, having had it determine my schedule as The Journal-News sports editor for the last eight years, but never have I been on this side of the rainout dilemma, as the actual organizer of an event.


The rain situation was one of several issues that had me borderline neurotic leading up to the game. (my beautiful and ever supportive wife Mary might remove the adjective "borderline").

Recent Hillsboro High School graduates Bradley Hill and Alexis Hefley volunteered their time to help us out! Alexis manned the table, and Bradley sang the National Anthem.

I was still adding players to the rosters the week before the game, trying to get up to 15 on each team, a plateau that I would not reach. My biggest challenge in this was not the willingness of players to play, but the fact that I was trying to get players to commit to the game when they had other things on their mind, namely their high school graduation.


Had I thought of the game in August instead of April, things might have gone more smoothly, although as my good friend Travis Matthews, coach of the Area All-Stars, reminded me, I am dealing with 17 and 18 year old kids here.

Hanging out with Uncle Daniel, and Grandma and Grandpa during the game.

I also fretted about concessions, referees and programs in the week leading up to the game. By some act of God, all of it seemed to come together in the end.


The RHSA, the Herman family and Donna and Jerry Wagahoff of West End in Raymond generously donated time, food and all the proceeds ($200) from the concession stand to put my fears to rest.
Another friend, Tim Gould of Carlinville, not only agreed to be one of the referees for the game, but he also secured another official, Tony Baines of Virden, for the other side of the field. I can't thank both of them enough for taking time to come over to Raymond to help make the game a success.
The programs also turned out fantastic, after some minor issues figuring out how to get them printed correctly, due in large part to the help of my father-in-law.

There's always time to play with puppies!

Ultimately even the two biggest worries of the day turned out to be minor blips on the radar. The field was a little damp from a week's worth of rain, but Saturday was nothing but sunshine when we kicked off at 5 p.m.


The player situation was touch and go for a while, especially after two players backed out that morning and a third didn't show up, but all worked out well in the end.

Aunt Anne came to visit and get a "vuvuzela!"

We shuffled two players from Staunton, Adam Mongold and Conner Wiles, to the Area All-Stars, giving them an extra shirt as a bonus. Mongold quickly became one of my favorite characters of the day, as he said the Grace Cup jerseys were now "the two nicest shirts I own."


I had a mild panic attack when the SCC scored 36 seconds into the game on a goal by Litchfield's Kelson Triplett, then again a minute later on a goal by Nick Copley of Pana, but Travis assured me that play would even out and everything was alright.

Grace also loved visiting with the spectators!

He was more or less right. The Area, who would have benefited from the three players who were unable to be at the game, trailed 9-2 going into halftime but probably had close to the same number of shots on goal as the SCC.


On the bright side, everyone seemed to be having fun, with the possible exception of Tyler Roth, Taylorville's all-sectional keeper who was took the brunt of the nine goals. At halftime I told Roth he did a great job and I meant it. He had a couple fantastic saves, as did fellow keepers Alex Hamerlinck and Arlen Magelitz, that would have made the any Sports Center highlight reel.

There were actually quite a few special moments on the field. Carlinville's Pietro Lentini and Lutheran's Adam Forestier both put on a clinic as they scored five goals each to lead their respective teams. They play different styles, but share the same ability to dominate on the field and were two of the best players I've seen in the area over the last eight years.

Kyle and Grace got interviewed by WSMI's Sarah Thomack after the game.

Copley would have four goals and was a force up top for the SCC. All that running took a toll on the Pana grad though, who seemed relieved when we shortened the game to 30 minutes in the second half due to the heat and lack of subs. This drew some chiding from SCC coach Jason Burke, who seemed to be having as much fun as the kids on the field.

Greenville's Will Schaufelberger would also score twice, including a stellar mid-air volley off a cross that may have been the goal of the game, while Mongold scored for the Area, who lost 12-6, but "won the second half" according to Coach Matthews.

Ultimately the game was just part of what made Saturday a success. All told, we raised $1,100 for the infantile neuroaxonal dystrophy research study at Washington University in honor of my daughter Grace, who is battling INAD and is the tournament's namesake.

Taking her out on the field for the ceremonial first kick was one of my two favorite moments from the game. The other was when I brought her out to the players after the game for the team photo.

Grace made the first official kick of the game!

I wanted them to see what we were raising money for. I wanted them to see what this stupid disease has taken away from my princess. But most of all, I wanted to thank them for playing in the game, because with out the players, the Grace Cup wouldn't be a reality.

And this won't be the last Grace Cup either. Throughout the game I talked with Travis, Jason and Terry Todt, who generously donated his services that day as well, about what we can do to make the game better.

Ultimately, I don't care if the game ever gets any bigger. I was thrilled with the amount we raised and the awareness we gained for soccer in this area and for INAD.

I imagine I'll do it for as long as I can, or for as long as players are still interested in playing. Ideally, I'll be doing it 15 years from now, watching Grace run around the field after graduating from Hillsboro High School, INAD nothing but a distant memory.

I'm not sure if that will ever happen or not, but then again, I wasn't sure we'd be playing soccer last Saturday either. Sometimes it feels awesome to be wrong.

KRH

The Vuvuzela

Support can come in hundreds of different ways. It can come in a hug. It can come in a kind word. It can come in a donation from someone that you may have never even met.

And in our case, it can also come from a two-foot long plastic horn that drones like a bee hive on steroids. While the vuvuzela has been called "an instrument from hell" by a soccer columnist during the horn's coming out party during the 2010 World Cup, the low, loud tone that comes from the bell has sounded particularly sweet for me the last week.

Just checking out the awesome vuvuzelas!!

A few weeks ago, Jim White told me that he and Darin Ashby had a plan to do something to help us on our Grace Filled Journey. The plan was to sell vuvuzelas with some sort of Grace-themed saying on them. Additionally, Jim thought it would be appropriate to have the "I Believe That We Will Win" phrase on the horns as well.

It's a phrase that both the United States National Soccer teams and Mary and I have used as inspiration to continue on our journey. While their goal of a World Cup is amazingly difficult, our goal of a treatment for INAD may be even more difficult to come by.

The Hillsboro girls gave Grace her very own shirt for this season!

But just because something is hard, it doesn't mean that it's not worth trying for and all of the support from the community makes trying much easier. Support like that from our friends in the Sunday night soccer league in Litchfield, where the vuvuzelas will be sold and where the Hillsboro team will be sporting shirts that say "Playing For Grace" on the sleeve. They presented Grace with a shirt last Sunday and made her an honorary member of the team. That's happened a few times now with different sports, but it never gets old. It's always special to our family.

Grace is an honorary team member this year!

And Grace not only got a pink Hillsboro shirt, but also a green and yellow shirt from the Southwestern team, who also made a very generous donation to the study.  We hope to get back and watch some of these inspiring girls play again this summer.

So from now on, when I hear that familiar buzz of the vuvuzela at a soccer game, it won't make me want to plug my ears or mute the TV. It will remind me of how much one little girl can inspire a community and how much a community can inspire her parents.

KRH