Monday, September 14, 2015

Fight the Fight

So what do you do when your child is diagnosed with an incurable, untreatable genetic disease that could take her life before her tenth birthday. You fight the fight. That's what you do.

We have been SO blessed by the outpouring of love and support since Grace was diagnosed with INAD last November.  As soon as Kyle's column ran in the paper, people immediately started asking what they could do to help. And our standard answer was that we were fine (well, as fine as you could be).

These are the new Fight the Fight shirts.
But then we heard about this research study at Washington University from one of the moms in our support group, and she wondered if we would help raise $150,000 to help fund it for two years.  I was hesitant at first, but I said yes, because that was one thing I could do to help Grace.  So many times I feel helpless in her quest, but that was something I could do.

Although, it turns out I didn't have to do much.  You, our awesome community, have pulled together and done it for us.  There isn't a single week that goes by that I don't get a phone call or hear about another fundraiser for the INAD study. Last week's Volley for Grace fundraiser was no exception.

Pete presented us with a check for $1,000 from Fight the Fight.
It actually started in February, when we brought Grace to meet science students at Morrisonville High School.  Their athletic director Megan Hanlon asked if we had ever heard of Fight the Fight, a not-for-profit company based in Gillespie that raises funds for families in medical crisis situations.  We had heard a little about it, but not much.  Basically, Fight the Fight sells specialty clothing and donates the proceeds to area families, and each recipient has a certain time period to benefit.

Megan told us she had contacted founder Pete Visintin about the possibility of adding Grace to their list of recipients.  She had hoped they could do some personalized shirts when Morrisonville hosted Lincolnwood in baseball later that spring.  However, Fight the Fight is growing in popularity, and the soonest Grace could get on the list was this fall. 

Eighth graders at Morrisonville won the penny wars competition, which raised $500!
So, she decided they would switch to volleyball between the two teams, which we thought was a great fit because two of Kyle's cousins would be freshmen on the Lincolnwood team this fall.

Kyle corresponded some with Pete about sharing our story on their website, and toward the end of the summer, he sent us the shirt designs. The front said "Volley for Grace" with a volleyball and her initials on the front. And the back said "You're Our Amazing Grace."  The shirts came in both red and orange, so we figured we would order one of each color and support both teams who support us so very much.

Grace's biggest fans, Kayley and Kensey.
The Volley for Grace event was held on Thursday, Sept. 10 at Morrisonville High School.  We arrived in time for the junior varsity game so we could see Kayley and Kensey play too.  As usual, Grace had quite a cheering section, including Kyle's parents, sister Mikaela and nephew Quincy, cousin Dana, and much of Kayley and Kensey's family. 

After the junior varsity game was over, they invited us down to the floor and we had a chance to meet Pete Visintin in person.  He talked a little bit about his inspiration to start Fight the Fight, which came when his dad was battling brain cancer. Then, he presented us with a $1,000 check for the INAD study, and said he would have a little more as the shirts could be ordered through that weekend. 

Grace's cheering section included her cousin, Quincy, Aunt Mikaela and cousin Dana.
Then, Kyle and I had a chance to talk.  We hadn't exactly worked out who would talk, but neither one of us are especially shy when it comes to telling our story.  I was sort of inspired by what Pete said, and so, I did most of the talking, just sharing how thanks to a very generous community, we were able to keep fighting the fight each and every day. 

You know, we have bad days sometimes, because the bottom line is that this disease sucks, and takes so much away from our beautiful daughter, our Amazing Grace. I would give anything in the world to hear her say, "I love you, mommy." Absolutely anything.

Just the girls hanging out at the game.
But somehow I always go back to a quote that Mikaela shared with me after Grace was diagnosed. "When life gives you 100 reasons to cry, show it you have 1,000 reasons to smile." Yes, there are times this wretched disease makes me cry, but there are a million more times that Grace makes me smile.  And I will always Fight the Fight for her.

After the check presentation, Morrisonville had another check presentation for us, raising $500 in a penny wars won by the eighth grade class. They also hosted a volleyball serving fundraiser that night and a 50/50 drawing, which brought in over $200. Add to that a donation from the teachers for a jeans day, and we came home with almost $2,000 for the INAD study.  Washington University KNOWS that Montgomery County cares about Grace and about INAD.

After Grace had a chance to meet some of the students and players, Megan gave her a gift, including her favorite candy, M&Ms, and her very own Washington University T-shirt.  We can't wait for her to wear it the next time we see Dr. Kotzbauer. 

We settled in to watch the varsity game, and Grace got some special snuggles with Aunt Mikaela while Kyle took photos of the game.  After the game, we posed for a few photos and chatted with people in the stands and coaches from both teams before heading for home after an awesome night.

And remember, always Fight the Fight!


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