A Stately Experience

It was certainly a stately occasion that we found ourselves in Bloomington this weekend for the IHSA girls state basketball tournament. 

Grace sort of became an unofficial Lady Hiltopper in January 2015, when then seniors Keriann Cooper, Kelsey Traylor and Jaicie Halleman invited our family to their senior night game. That night, each of the basketball players wore purple gracelets and Grace was introduced as part of the team before the start of the game.

Lunch at D'Arcy's Pub to start our adventure.

Ever since then, the Lady Toppers have kind of adopted Grace, inviting her to games, and making her feel very special. Two former Lady Toppers (Carly Cameron and Lindsey Storm) still keep in touch with us and meet us for ice cream when they are home from school.

Resting up for the big game.

So, it seemed only fitting that we follow this year's Lady Toppers to the state tournament in Bloomington. We only made it to a couple of regular season game this year, and Grace was sick with pneumonia in January, so we didn't get to take her to any of the postseason games. But thanks to live tweets from Kyle and Tim Mize on WSMI Radio, we were able to keep up with their winning ways.

Hanging out at the semi-final state game.

Kyle took this photo from the floor.

As part of the clinical trial, Kyle and I were taking Grace to New Jersey when the Lady Toppers were winning their supersectional game and punching their ticket to state. We watched the first half of the game via Facebook live as we were sitting on the airplane waiting for the plane to take off. We had to wait until we landed to find out that they won! 

We flew back home the next day, and Kyle asked if the girls and I would accompany him to the state tourney. And we decided a family adventure was exactly what we needed!

Swimming at the hotel.

Grace has physical therapy in Springfield on Friday mornings, which is already halfway to Bloomington. So, we loaded up the van and took off. After a great session of physical therapy, we started our family adventure with lunch at D'Arcy's Pub for horseshoes. Because after all, all great adventures start with good food!

Hanging out at the Discovery Children's Museum.

Kyle booked us another fabulous room at the Hampton Inn in Bloomington, and we checked in so I could feed Grace and we let Charley run around the room for a bit. She sort of gets spoiled having Netflix at home and the chance to watch her favorite programs whenever she wants. She didn't quite understand why we couldn't just put Mickey on whenever she wanted. But it was cute to watch her.

But before long, it was time to head to Redbird Arena to cheer for our favorite Lady Toppers. When we arrived, it was amazing to see the sea of orange and all the community members who came to watch. We found some accessible seats, which provided a place for Grace's chair, as well as space for Charley to have a little room to play. Some other Hillsboro fans joined us, and we had a great time visiting and watching the game. Although the Lady Toppers started off strong and led at halftime, they came up a little short in the end. But it was such a great game, and we were so proud of them!

Just the girls hanging out at the third place state game!

Good games call for good food, so we ordered pizza to take back to the hotel, and Charley kept repeating pizza all the way on the drive back.

Even though Charley woke up bright and early, we took advantage of the opportunity to take the girls swimming and even to the Discovery Children's Museum before returning to Redbird Arena that night.

Dinner at the world-famous Portillo's before heading home.

It was another fun night of popcorn, M&Ms and basketball. And even though this game didn't go the Lady Toppers' way either, they showed a lot of heart, and we are so proud of how far they made it. They were so much fun to watch this season and they finished fourth in state! We even enjoyed dinner at Portillo's before heading for home.

To cap off our stately weekend, we took the girls to a welcome home rally for the Lady Toppers Sunday afternoon at the school. We loved seeing the community come together for the team, and were especially touched that senior Sheridan Lyerla thanked Kyle for bringing Grace to as many games as he could and called her a "spark plug" for the team. The five seniors even took time to pose with Grace for a photo and let her wear one of their state medals. I think Grace's smile showed how all of us were feeling.

Grace was all smiles to meet the senior Lady Toppers at the game!

We know there's a pretty good chance that Grace will probably never actually suit up for the Lady Toppers. If she got her "grace" from Kyle or I, there was a pretty good chance she wouldn't be very athletic even without a diagnosis of INAD. Even if she can't be an official part of the team someday, it's been pretty special to see the way the teams have embraced her and shared in our Grace-Filled Journey. After all, orange and black is where it's at . . . 

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Remembering Landon

This week, the world lost another beautiful soul to the devastating disease of INAD.

Landon Caputo passed away snuggling in the arms of his mother this week when he was just six years old. And while we know Landon is at peace now, we can't help but grieve for his passing.

Grace sent Landon a St. Louis Cardinals Mickey Mouse for his collection.

Although we never got to meet Landon, we got to know him through his mom's Facebook posts. He was a little boy who loved Mickey Mouse, smiling and being with his family, including his big sister, Issy. He was so brave and courageous, just like all the kids who battle INAD. They never complain about the things life has taken from them. Instead, they smile and remind all of us to live each day to the fullest.

Since Landon is just a little younger than Grace, he was diagnosed with INAD around the same time. And we got to know his parents through a support group on Facebook. Even though we have never met in person, I consider Landon's mom, Ashley a close friend. There's just something about sharing a life experience like this that bonds people together, whether or not they ever have the chance to meet in person.

Landon sent Grace some Mickey pajamas for her birthday one year!

Since Grace and Landon were about the same age, they have sort of gone through the progression of INAD at the same time. That has given Ashley and I a chance to bounce ideas off each other, check in on one another and share when things get hard.

Ashley and I had been texting last week. She was looking in on Grace, asking us about how the trial was going. She shared that Landon had been having a rough time, and that they were spending his final few days together as a family. 

Grace also sent Landon a pirate Mickey Mouse for his collection.

We are heartbroken for Landon's family. Instead of learning to write his name and read books in kindergarten, Landon bravely fought against a ravishing disease every day of his life. Strong and courageous, Landon's life is reminder to all of us that life is always to be celebrated. 

And we will never stop trying to #BeatINAD for Landon, Grace and all the brave kids who fight against INAD with ever fiber of their being. We will continue to raise awareness and funding for research until one day no kid has to fight INAD anymore.

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A New Beginning

Just before we left, the director of the first-ever clinical trial said she thought we should take a picture with Grace of the momentous occasion that she tried her first does of RT001. And of course, that was right up our alley, so we grabbed Flat Gracie and posed for a photo.

Getting ready to fly to New Jersey.

In some ways, it marked the end of what seemed like very long journey. We first learned about Retrotope and their experimental drug, RT001, more than a year ago, when they published a press release online that there were two INAD patients taking the drug as part of a compassionate use program. The drug company has claimed that the drug is able to stop or at least slow the progression of INAD and can also help to reacquire lost skills. We immediately contacted the company, and discovered they were hoping to do a clinical trial for the drug in INAD patients, and that Grace would likely be a candidate.

At the time, they told us the trial could start as early as March of next year. We learned that things like this often times take much longer than we would like. When it didn't start in March, we heard July or August, then October, and we got a call after the first of this year that Grace would be able to travel to New Jersey and participate in the clinical trial.

Grace shortly after taking her first dose of RT001

Kyle and I have spent months and months debating whether or not to enroll Grace in the trial. At seven and a half years old, she's the oldest patient they have right now, and the cut-off age for participation is ten. We know this drug is not a cure, and that the positive effects we see may be minimal. But you never, ever know how something is going to play out, and we wanted Grace to have a chance to try this new drug. We also wanted to be able to further INAD research, and since we didn't feel the drug would have any harmful side effects to her, we finally decided to go for it.

In January, we made a week long trek to New Jersey, driving the 13 hours and taking Grace to three days of baseline appointments. It was a long week for sure, but we learned a lot, and we are so grateful that Grace is a good traveler and we met lots of nice people.

I think the hardest part of participating in the trial is that we had to return to New Jersey in two weeks to 45 days after those initial tests so Grace could have another baseline assessment and officially start the use of RT001. This visit was likely to last only part of a morning, so instead of driving the 900 miles, we opted to fly and do the trip in two days.

Checking out the New York City skyline!

We haven't flown with Grace in nearly a year and a half, and both of us were a little worried about how it would play out.   Since Grace can't sit up or hold her head up, it makes it tricky to sit her in her own seat buckled up for the take off, and the last time we flew with her, the airline broke her medical stroller.

But we pushed those worries aside (mostly), and decided it was the best decision since our trip was so short. And we couldn't be more pleased with the way everyone took care of us. When I texted that to Kyle's mom on the way home, she wrote back that Grace just seems to bring that out in people, and I couldn't agree more.  We flew Southwest, where everyone took amazing care of us. From checking us in and setting us up for pre-boarding to making sure we had everything we needed, we were very comfortable on both flights. Grace was even able to sleep across my lap.  We rented a minivan from Enterprise, which was also a wonderful experience and drove it to our favorite Hampton Inn in Denville, where the night clerk offered to say a special prayer for Grace during his morning devotional. We are continually blessed by so many that happen across our paths on this Grace-Filled Journey.

This morning, Grace had another baseline assessment, and they showed us how we can administer the drug to her each day. It's a little overwhelming. Clinical trials require a lot of data and record-keeping (and I can't say those things fall in my strong suit). But we are excited that she finally had a chance to try the drug that has helped some INAD kiddos.

A view of Lady Liberty.

I am SO proud of Grace for being part of this initial clinical trial. She has been so strong and brave through each and every exam, each and every assessment and even trying the medicine this morning. She never complains and always has a smile for everyone we encounter. She reminds us that life is always to be celebrated and to life each and every moment to the fullest. Oh, and that a smile can brighten everyone's day.

Before we headed for home, we had a little time to kill before we got to the airport. As he was driving, Kyle saw a sign for Liberty State Park with viewings of Ellis Island and the Statue of Liberty. How could we pass up an opportunity to take in such great sights? Although it was too cold to take Grace on a ferry ride to see the statue up close, we walked around and looked at the New York City skyline and stopped to see Lady Liberty. What better place to start a new adventure than at a place that marked one of the beginnings of our country.

Ellis Island and the Statue of Liberty.

So, in a way, Grace getting to try the drug marked the end of a long journey, it also marked a new beginning. Over the course of the next year, we will continue to record when she takes the drug and any progress she makes along the way. We also have two more trips to New Jersey at the six-month mark and the one-year mark to assess any improvements or changes.  Next time we go, we hope to take Charley with us and do a little sight-seeing in the area.

We won't know for awhile if RT001 will make any difference for Grace. Maybe it helps her a little, and maybe it doesn't. But we know that it's a chance we took to give Grace every single chance there is. And we are SO grateful to each and every person who helped us along the way on this amazing Grace-Filled Journey.

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