Monday, March 7, 2016

A Stately Experience

As we rang in the new year in 2016, Kyle and I talked about some of our goals for the upcoming year.  Our friends, family and community had been SO generous in helping us to raise funds for INAD research over the past year, which allowed us to further help the study at Washington University. To date, around $100,000 has been given to the study in honor of Grace, which is nothing short of amazing.

Celebrating Rare Disease Day in Springfield.
This year, we decided we would continue to raise funds, even if we weren't able to raise as much. Fundraisers of all kinds abound, though, and our community continues to blow us away. 

But in addition to raising funds, we made it a big goal of ours this year to really help spread awareness about INAD in all corners of the world.  With less than 50 children affected with this devastating disease all over the world, that makes the job even bigger. But we will not be deterred from sharing our story and making sure everyone knows what it means for a child to suffer from INAD.

Our friend, Linsday, came to the rescue and helped us when we were lost!
And sometimes, along the way, you meet people who really step up and help you in your endeavors. Meet Illinois State Representative Avery Bourne, who has been serving our district since last year.  Ever since hearing our story, she has worn a purple gracelet, and been one of Grace's biggest fans.

Oh, just sitting in the House Gallery.
Earlier this year, Kyle and I talked about the possibility of asking our mayor or the county board chairman about signing a proclamation in honor of Rare Disease Day in September. Since you miss 100 percent of the shots you don't take, we opted to ask our state representative about a resolution in Grace's honor. She loved the idea, and it turned out even more fabulous than we ever could have imagined.

State Representative Bourne kept us up-to-date throughout the process, which started when the resolution was filed. Eventually, another sponsor was added to the resolution, and we were invited to the Capital in Springfield on Wednesday, March 2, where the resolution would actually be read on the House floor during session.  Talk about ecstatic.  It was all we could ever have hoped for.

LOVE this photo of Grace with State Representative Avery Bourne.
Family photo op!
The resolution was read in committee in the morning before we arrived, where it passed unanimously. Ms. Bourne wore a purple dress in honor of Grace, and talked some of her colleagues into wearing purple to the committee meeting as well.  She said several of her fellow legislators have asked about her purple gracelet, and were excited to see Grace at the Capital that day.

Snuggles with Daddy.
Grace played hooky from school that morning, and we headed up to Springfield, where we met with Grandma and Grandpa Galer, who were also able to come up for the resolution.  Although we initially had some trouble with parking and finding our way to the gallery, our friend Lindsay came to the rescue, and made sure we got to the right place.  Shortly after we arrived, Ms. Bourne came to meet us in the gallery, where she had all sorts of things for Grace, including a proclamation in honor of Rare Disease Day, signed by Governor Bruce Rauner and Secretary of State Jesse White, as well as a very special letter from the governor.  After the resolution was read on the House floor, she also brought us a signed copy of that as well.

This was my favorite photo from the experience.
Kyle and I have never really been "in the spotlight" kinds of people. That's why journalism is such a great fit for us. We are called to be the observers in the room, the ones who tell the story. So "being" the story is something that's a step out of our comfort zone. But I can't tell you how proud I was of Grace as we stood up in the House gallery as the resolution was read. 

Family photo in the Governor's office.
Afterward, Ms. Bourne invited us to take Grace's photo in the governor's office. He wasn't in, but we took a photo of Grace just the same, and posed for a few other photos in the Capital as well.  Then, all too soon, it was time to head for home, and back to reality. It was a paper day after all.

Cheesing with Grandma and Grandpa Galer.
Kyle and I are so grateful to State Representative Bourne and all the legislators who helped us make this a reality, and really have a chance to raise more awareness for INAD.  Until there is a treatment or a cure for INAD, we will continue to be Grace's voice, and a voice for all those who suffer from this devastating disease. With your continued love and support, we will #beatINAD.


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