A Very Generous Community

Today, we give thanks to be part of one of the very best communities in the world. It's a small community, a county of only 30,000 in central Illinois. But this community never lets its size get in the way of its giant and very generous heart.

Just over a year ago, we learned that Grace had INAD, a terrible, awful disease that would rob her of her abilities to walk and talk, and possibly even take her life before her tenth birthday. And while it takes those things from Grace, it also takes simple things from me and Kyle. We may never hear Grace say "I love you," and though I know that to be true, it's just another way INAD steals happiness from about 30 families all over the world.

Two happy girls with a check for $70,000 for the INAD research study.

But Kyle and I didn't have much time to be sad about INAD. Shortly after his column (and our very first blog) was published, this tiny county in the middle of nowhere, showed us love and compassion that we will never forget. There were Facebook posts, messages, cards, meals and more offers to help than we could ever repay.

Slowly, we started to get offers to help with fundraisers for anything that we needed. Since our insurance really covers most of Grace's medical needs, we didn't feel like that was appropriate. We thanked everyone for their offers, but decided against allowing fundraisers on Grace's behalf.

And then another INAD mom, Kristin Phillips, asked if we would consider helping to fundraise for a research study. She was looking for about ten families who would be interested in raising from $10,000 to $30,000 for this study, which would cost about $100,000 to get started.

I took a big gulp and thought about trying to raise $10,000, not even knowing where to start or even if it was a good idea. But Kristin had given me the name of the doctor who would do the project, and I googled his name, discovering he worked at Washington University in St. Louis. Of all the medical research institutions in the entire world, this one was virtually in our back yard. And we also know some amazing things have come from Washington University.

So, although I was hesitant, I told Kristin we would try to help with the fundraising efforts, and we joined the crowdrise initiative she had started, making a place to donate online in honor of Grace. We set Grace's goal at $5,000, and it didn't take long to reach that mark. That website, which is still active has raised nearly $7,000 in Grace's name.

Then fundraising events sort of took on a life of their own.  It started with a few high school sporting events, and then our family ordered 2,500 purple wristbands, which have affectionately become known as "gracelets." We never really intended to sell them, just pass them out as a reminder to keep Grace in your prayers. But as people stopped in to pick them up, they often left a donation.

I kept Kristin up-to-date on how our fundraising efforts were going, and she let me know how other families were doing. In March, Dr. Paul Kotzbauer needed $10,000 to get the study started. We had $8,000 at the time, so I carefully wrote a check, sealed it in an envelope and mailed it to Washington University.  It was received, and the study was started.

And then things really took off. From bake sales to raffles, T-shirts, homemade bracelets and car decals to more sporting events, which also helped us to raise awareness. Along the way, I kept all the money in a savings account, which continued to grow and grow. 

I kept careful track of money we sent to the study outside that savings account too.  From memorials for friends and family members to donations straight to Washington University, that number continued to grow too.

We tried our best to be at as many of the events as possible, though we had little to do with most of the planning. In June, Kyle organized the Grace Cup, a senior all-star soccer game, and my family planned A Grace-Filled 5K in September, just before Grace's fourth birthday.  It ended up raising $25,000, and we were honored to have Dr. Kotzbauer and four members of his research lab there to participate.  We gave him an honorary "big" check that day with a promise to bring all that we had collected later this fall.

Officially giving our $70,000 check to Dr. Kotzbauer.

He's always very gracious to meet with us when we are in St. Louis for Grace's appointments, and he made time for us on the afternoon of Friday. Dec. 11. We had told him, we had a check for $50,000, but thanks to a generous community, we ended up having $70,000, which came as a surprise to him. Grace even sported her own Washington University T-shirt for the occasion.

Dr. Kotzbauer told us the study was ongoing and that they were making good progress. He said the funding would go a long way to support their efforts, and he asked us to thank our community on a job well done, adding that our community's support inspires him in all his endeavors as well.

To date, from the first crowdrise donations to fundraisers this fall, we have donated around $95,000 in Grace's name to the study.  And that's solely because of this tiny community with the biggest heart. We will forever be grateful for your love, support, prayers and your generosity.

I left about $2,500 in the savings account as we continue to participate in a variety of fundraising efforts. We will keep collecting until it's time to bring another big check to Dr. Kotzbauer and his team.

There's no way to know if his study will directly help Grace or not. Only God knows the ending to our journey. But this much I know. Being part of this study and raising money to support it gives me great hope for Grace and for future generations of kids with INAD. 

The journey is never easy, full of bumps and tears. But more often than not, the journey is full of smiles, laughs and caring people who show us over and over again that we are never alone in our quest to #beatINAD.

mlh