Monday, February 25, 2019

Appointments and Adventures

Auguste Rodin said, "nothing is a waste of time if you use the experience wisely."

Today, our adventures took us to St. Louis Children's Hospital where Grace had an appointment with her neurologist. Over the winter, we had noticed Grace had been having some seizure-like activity, and we wanted to get it checked out.  We just got a new neurologist last November, and we really liked her. But she was out on maternity leave until recently, so today was the day we got together.

As part of the clinical trial, Grace had her first EEG done, and it showed some baseline seizure activity. Grace's regular doctor suggested we start on a low dose of seizure medicine until we saw her neurologist, as a precaution for aspiration.

I have always loved this butterfly at Children's Hospital. Just reminds me of hope.
At the appointment today, her neurologist suggested we continue the medication plan, and it gave us a chance to talk to her about the clinical trial. We feel so lucky to have her to bounce ideas off of, and she really understands the way we choose to help Grace live each and every day to the fullest.

And because we like to make the most of our trips to St. Louis, we usually plan for something fun. Sometimes, we go to the St. Louis Zoo or the Magic House. Other times, we stop by to see Dr. Kotzbauer for an INAD research update or Dr. Omurtag to show off how much Charlotte has grown!

But today, was an extra special visit. Our friend Caleb is currently at the Siteman Cancer Center battling osteosarcoma, and we had a chance to stop by and visit with he and his awesome wife, Bethany, who works with us at the paper.  It was such a good time chatting and laughing, and we continue to pray for a miracle as Caleb continues his battle against cancer.

Delicious lunch at Pappy's Smokehouse.
Then, we stopped at one of our favorite haunts for lunch. Although Grace Meat + Three is always one of our favorite stops, it's closed on Mondays. So, we picked Pappy's Smokehouse, and I got my usual BBQ Spud (with enough left over for lunch tomorrow). Everyone there is always so friendly and helpful, and there's plenty of room to feed Grace. 

So, while doctor's appointments can sometimes be a drag or just one more thing to do. We always try to make the most of our time together on this Grace-Filled Journey!


Sunday, February 24, 2019

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 . . . 


Thursday, February 21, 2019

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.


Tuesday, February 19, 2019

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.


Sunday, February 17, 2019

Happy 2nd Birthday, Charlotte!

The day before her second birthday, Charlotte came into our bedroom first thing in the morning, all by herself. It was the first day she had figured out how to crawl out of her crib, and after startling me at first, it was cute to see her so proud of her accomplishment.

Today, Charlotte Grace Herschelman turns two years old, and it's been immensely fun to watch her accomplish so many things. From her first "da da" to picking out all the characters on the Mickey Mouse Clubhouse, we have loved listening to her learn how to talk. Kyle's favorites are "snicky" instead of "stinky" and "Goosey" instead of "Goofy." I told Kyle that one day I will miss trying to figure out all the things she is trying to say!

February 2019
She's also mastered so many other skills in her first two years, walking and then running, picking out her favorite toys to play with and giving hugs and kisses. Most of the time, Kyle and I just sit and watch her play, in awe of all the things she learns each and every day.

In some ways, as excited as we are that Charlotte is meeting all these milestones, it's a bit bittersweet at times. Charlotte has already far surpassed any of the skills Grace ever had when she was younger. Grace had a handful of words (my favorite was always "ma ma") and she knew all her animal sounds. She was able to cruise the furniture for a time and walk in a reverse walker, but she was never able to walk on her own. And that's just the tip of the iceberg. INAD has stolen so many things from her that she's not even able to sit up on her own anymore.

But INAD hasn't stolen her ability to smile, and when she smiles at Charlotte, it seems that my world is complete.

February 2018
I never had a sister, but I have always heard about the special bond between sisters. And it would seem that Charlotte and Grace have formed that bond already. Just yesterday, Charlotte crawled up on top of Grace just to give her a hug and a kiss. It was about the sweetest thing. Charlotte loves talking to Grace, and in true big sister fashion, Grace laughs anytime Charlotte gets scolded for something. That little bit of normalcy never ceases to make me smile.

Accepting that Grace has INAD means accepting that our dreams for Grace's future have changed. When Grace was a baby, we wondered what she would like to do when she got bigger. She always loved playing with soccer balls, and we thought she might like sports. We wondered if she would like school or become a writer someday like Kyle and I. Sometimes it's hard to accept when dreams change, but we also know that Grace has already made a huge impact in the world.

February 2017
The birth of Charlotte two years ago brought up all those same types of questions. We wondered what she will be like someday. Will she be the head of her class or the star of the basketball team? Will she want to join 4H or Girl Scouts? If the past two years are any indication of her determination and perseverance, I would say Charlotte will be able to do anything she puts her mind to. And I'm okay with that. I've also seen her compassion and empathy for her sister, and it's my hope that whatever she decides to do in this world someday, that she does it with kindness. That would be my greatest dream for her.

The past two years have flown by so quickly, and it seems like Charlotte has already been part of our family forever. We continue to be blessed by her spunky attitude and caring heart. We can't wait to see what the future holds for her.


Saturday, February 16, 2019

Brighten Up Rare Disease Day

This year, on the last day of February, Kyle and I will celebrate being married for ten years. And while Feb. 28 will always be a special day to us, when Grace was diagnosed with iNAD, it became special for another reason.

The National Organization of Rare Diseases marks Feb. 28 as Rare Disease Day. The main objective is to raise more awareness for all types of rare diseases all over the world. Why is this so important? Because according to the Rare Disease Day website, one in every 20 people will live with a rare disease at some point in his or her life. And many times there is no cure for these rare diseases that often times go undiagnosed.

This is our fifth Rare Disease Day since Grace has been diagnosed with INAD. And we've done a variety of different things over the years, sharing photos and videos to social media and working to get our awesome communities involved in our efforts.

Last year, we launched a Beat INAD coloring page that Kyle and I designed. We offered the coloring sheet to schools, and we were overwhelmed to see all the coloring pages all across the county. Kids and grown-ups alike shared their artwork helping us to raise more awareness for INAD.

And last year's coloring page was neat, but this year, we were blessed to have graphic designer Danielle Seago of Doodlebug doodle an awesome coloring sheet for us with the Princess Grace logo. Seriously, it's awesome, and you won't want to miss a chance to color yours.  Special thanks to Danielle for donating her time to our project, and you can support her work by purchasing some of her children's books on Amazon (Marvelous and Kind Kloey and Faith Over Fear).  

We hope that everyone loves the new coloring sheet as much as we do. We will include a copy on our Facebook page that can be downloaded and would be more than happy to email a copy to anyone interested. Feel free to share the coloring sheets with anyone you think who would like to help us raise awareness, and make sure you share the finished product with us on Facebook, Twitter or Instagram.

And don't forget that Rare Disease Day is Feb. 28. Every single person can make a difference in the life of someone with a rare disease.


Tuesday, February 12, 2019

The Grace Race Is Back

It’s official! Thanks to a vote by the Hillsboro City Council tonight, the next Grace Race is officially on the books for Saturday, Aug. 31, 2019!  And we hope you will mark our calendars to join us and help us once again raise much-needed funding for INAD research!

Grace hopes you will join us for the Grace Race on Aug. 31!
Plans are still being made for this year’s event, but it’s always such a blessing and encouragement to us to see so many of our friends, family and our community step off the race line for Grace. And while we truly wish Grace could be taking those steps herself, we are so honored and humbled for all those who run and walk in her honor.

The first A Grace-Filled Journey 5K and one-mile fun run event was held in 2015, less than one year after we learned Grace had INAD. It was an idea by my brother and his wife, who are both active runners. I always tell people if they see me running, they should probably run too because it means something is chasing me!

But not John and Emily. They run nearly all the time, like even when they are home over Christmas break! And in the first year after Grace was diagnosed with INAD, Johnny pledged to run 1,000 miles in her honor that year. That would be the year he ran his first marathon, and he attached her photo to his race bib and wrote her name on his shoes, with a note that read he ran in her honor because he knew one day she would be able to run with him.

Johnny's shoes and race bib from his first marathon.
We know now that Grace is unlikely to ever take steps in a marathon, 5K race or even walk to school, but we continue to be blessed by all those who take steps in her honor each and every single day, by sharing her story and helping us to raise awareness for INAD.

This is the text he sent me on the day of his first marathon.

There were over 650 people who participated in that first Grace Race, including more than 150 who ran virtually in other parts of the country and the world. Big props to Kylie Walch for running her 5K in Myanmar and Kyle Stewart for making his trek in London, England. 

Then we skipped a year before planning the next Grace Race, and the second edition was held in 2017. At six months old, it marked Charlotte’s first Grace Race, and she nearly slept through the entire thing. Which is okay, because Grace slept through her entire birthday party that followed.

This time, we set a goal to have virtual runners in all 50 states, and thanks to our very dedicated friends and family, we made that goal too! That day, there was someone running or walking a 5K in Grace’s honor in each and every state in the country. We absolutely loved seeing all the photos on Facebook and Instagram.

Johnny gave Grace his first medal from the Marine Corps marathon.
Add that to the more than 500 runners and walkers who made it to Hillsboro, and we consider ourselves truly blessed to have so many wonderful people on our Grace-Filled Journey. 

The day always turns out to be a blur for us, but special thanks to our friend, James Ryan of NokoPhoto for taking photos at both races for us to enjoy in the days and weeks that follow the race. Watching the smiles of runners and walkers of all ages cross that balloon-archway finish line never fails to bring a big smile to my face.

The second Grace Race brought in $25,000 for Dr. Paul Kotzbauer's research.
We’re not exactly sure all the details of what this year’s race will bring, but you can bet it will be a special day for our family. And we hope you will save the date of Saturday, Aug. 31 and join us in Hillsboro or run in Grace’s honor wherever you are. I guarantee you won’t regret it.


Monday, February 11, 2019

We Solemnly Swear . . . We Love To Read

I have been a fan of Harry Potter for nearly 20 years. Just before I left for a semester abroad in London, my cousin Dru suggested I read Harry Potter and the Sorcerer's Stone. I figured it was a kids' book, and kind of scoffed at the idea. But I read it anyway, and it didn't take me long to be hooked. I poured through the first four books, and could hardly wait for the fifth one to be published. 

Grace and her collection of Harry Potter books.
And now, I've read all the books and seen all the movies. The first movie came out in theaters when I lived in London, and I loved seeing it there with my friends. We even had a chance to meet THE Professor Snape when we met Alan Rickman at the stage door following an old Noel Coward play. 

When Kyle and I first got together, he had never read any of the Harry Potter books and just really didn't have much interest in them. Since Kyle knew how much I loved them,  he bought me all the movies for Christmas one year, and even sort-of begrudgingly agreed to watch them with me.  

Grace has always been all smiles reading Harry Potter. This is when we read the first book.
Even though we had all the books, I was super excited the year they came out with the first book in an illustrated copy. It's always been kind of hard to find things to buy Grace for Christmas, and I couldn't wait to put that under the tree.

She was only four, but after the first of the year, she and I set out to embark on the adventures of Harry Potter together. Reading before bedtime was our ritual every night, and I knew she would love all the illustrations.

It's been fun to read them together as a family.
A few chapters in, Kyle happened to join us one night. It wasn't really planned, but he sort of discovered that he liked Harry Potter too. Starting that very night, he joined us every night as we read our way through the first Harry Potter book.

Family fun reading Harry Potter.
It was so much fun, that we decided we would just read through the whole series together as a family. And this January, three years later, we finished the last of the books together. With several of the books coming in at over 700 pages, that's a lot of quality family reading time. And we wouldn't trade it for anything!

I think what has always drawn me to the Harry Potter stories is the fabulous writing, and the recurring theme that bravery and courage can overcome fear. It was fun to read to Grace a story about kids that can do the impossible, knowing that she's doing the impossible each and every day in her fight against INAD.

Finishing the last Harry Potter book in January.
She will always be the strongest and bravest person I've ever known, and just like the characters in Harry Potter, she constantly helps others to find their strengths and overcome their fears.
While Grace may never get to embark on her own adventures to Hogwarts, I'll always be glad that we had a chance to read all the books together as a family. And I can't wait to read them again to Charlotte.


Tuesday, February 5, 2019

A Date With A Mouse

After logging almost 900 miles in the car on Thursday and Friday, you may have thought that another hour drive on Saturday would be the last thing on our agenda. That may have been the case for most Saturdays, but on Feb. 2, we had a date with a mouse. Two of them in fact. And a duck. And some sort of dog-type creature. And lots and lots of princesses.

Minnie Mouse kisses

The day after we got home from New Jersey, Mary, Grace, Charlotte and I hit the road again, this time for St. Louis, where Disney on Ice was invading the Enterprise Center. This plan has been in the works for several months as my sister Mikaela came up with the idea of making it a big family outing as a Christmas present for my mom. All told, there are 14 of us in our immediate family and 12 were able to make the trip. My brother Shane missed due to work, as did my sister-in-law Monica.

The Herschelman crew at Disney on Ice
Grandma Kim and all her grandkids
While they were definitely missed, it was fun to see my brother Daniel try to run a zone defense against his two boys, Keelen (age three) and Kolston (age 1, going on 21). With Mikaela and her husband Scott's three-year-old Quincy and our own Charley Danger in the mix, that meant four kiddos under four in our group. That's enough to make any superstar parent start pricing one-way trips to the Bahamas.

Charlotte was SO excited to see Mickey and Minnie
But for my mom, it was almost perfect. With Daniel's crew in Fulton, MO, Mikaela's in Arnold, Mo and us in Hillsboro, it's a rare occasion to have all five grandkids in the same place at the same time. Sure there are some tense moments, like when Charley tries to hug a reluctant Quincy or when one grandkid is getting too much attention from Grandma Kim, but for the most part, it's my mom's idea of heaven. My dad is pretty happy with too I think, or as happy as he ever gets. Those who know my dad know that I'm kidding (kind of).

Family photo at Disney on Ice
The show itself was pretty neat too. Mikaela got us tickets in the wheel chair accessible section so we could keep Grace in her stroller, while the others were just a few rows behind us. All of the kids seemed to really enjoy the music, the skating and the story, but nobody enjoyed seeing Mickey and Minnie more than Charlotte. When they first came out, the Dangerous One screamed in delight, hopped off her mommy's lap and danced and banged on the plastic partition that separated us from the lower deck. Usually that plastic protects fans from hockey pucks at the Blues games, but in this case it probably kept Charley from charging down the stares and bear hugging the main attractions.

The kids loved hanging out at Grace Meat+Three
Just chilling at Grace Meat+Three
After the show, we decided to have dinner at one of our favorite places in the world, Grace Meat+3. We weren't the only ones with that thought apparently as the restaurant was hopping. Even with the big crowd, our buddy and Grace Meat+3's owner Rick Lewis got us a spot at one of our favorite tables. The food was fantastic as always, with the kiddos going with grilled cheese and mac and cheese, while the adults tackled everything from fried chicken to prime rib to catfish to Mary's personal favorite, "The Grace Burger". Daniel went with the hot chicken po' boy, which proceeded to melt his face off. But in a good way of course.

Once dinner was done, we packed up and headed our separate ways. It was a really cool night and one I know my mom won't forget anytime soon. We are so glad that we were able to experience it with Grace and Charlotte.


Friday, February 1, 2019

Taking A Chance On Grace

Last Sunday afternoon, Kyle, Grace and I embarked on a new adventure on this journey, a trip to Morristown, New Jersey, to take the first step in participating in a clinical trial for a drug called RT0001 with a California-based company called Retrotope. 

Grace took part in the first-ever clinical trial for INAD.
It's the first-ever potential treatment for INAD using a D-PUFA (deuterated polyunsaturated fatty acid) that could help to prevent against lipid peroxidation damage and help to restore cellular function. In case you're wondering, I got that from the Retrotope website, and I know about as much as it means as you do.

Grace was so brave during three days of testing.
But in some layman terms, INAD causes a lipid to build up on the end of Grace's nerves in toxic levels. That causes the nerves not to function, and is why Grace can't use her arms or legs. It cause the atrophy of all her nerves, including the optic nerve, which is why she struggles with her vision as well.

We made our home away from home in our favorite Hampton Inn.
The drug, RT0001, is supposed to help break down that build up on the end of Grace's nerves. And as far as we know, doesn't have any harmful side effects.

So, after months and months of discussion, Kyle and I decided to let Grace be part of the trial in hopes it would help slow the regression of INAD. 

Charlotte spent the week with Grandma and Grandpa.
So, that Sunday, we packed the van and loaded up for then nearly 900-mile drive. The first visit would include six testing sessions in various locations, so it was much easier for us to have our van and be able to bring the things Grace would need to be part of the trial. It was definitely a long couple of days, but we are lucky that Grace is such a good traveler. And I'm always grateful that Kyle does most of the driving.

We enjoyed FaceTiming with Charlotte while we were gone.
Our first day in Morristown included some baseline assessment testing, done on video. We provided all of Grace's medical history, including what ages she lost certain skills. I had to get out her baby book to remember a lot of it! But the assessments included things like, could Grace sit up with support, could she try to roll over, could she raise her arms? It was documented on video because they are hopeful that this drug may improve some of those skills. That's not saying that being on this drug will help Grace to roll over, but the drug company can show small results too, things like Grace trying to roll over is an improvement, even if it's only a tiny improvement. 

We loved meeting other members of the INAD community.
They also spent a lot of time going over what would be required of us in the coming year as part of the trial. It's going to be tough. There's a daily food journal, video updates and check-ins, as well as additional visits to the site for a repeat of these assessments at six months and at one year.

INAD moms have a special bond.
The other testing included a nerve conduction test, a hearing screening, an EEG, blood work and an eye exam. All of the tests looked at Grace's nerve function. Grace had never had many of these tests done before, and none of them were invasive or hurt her. Kyle and I asked lots of questions throughout about each of the exams. Those exams will all be repeated in six months to see if the nerve function has improved any.

One of the fun places we ate was a hibachi restaurant, and Kyle got sushi.
All of the people helping with the trial have been wonderful to work with. They helped us navigate a tough week, and we will work with them over the course of the next year.

I think the hardest part of the whole experience was confronting the fact that Grace's nerve function is so poor. I mean, it's not like we didn't already know that Grace had lost most of these skills. But the hearing test showed there was no response from nerves in her ears to her brain stem. The same thing was found with the nerves in her arms and legs. 
Most days, that's not something I think about. Most days, we wake up, do the things we need to do to take care of Grace and try to provide the best life for her. But we don't stop to think about all that's been taken away from her. And for that, I'm grateful. Most days, we simply love Grace and don't worry about INAD, or the fact that it continues to take it's toll on her beautiful body.

Home sweet home.
In the end, I think that's why we agreed to be part of the study, despite the monumental amount of work required to participate in the trial. We want to give Grace every chance there is. And we hope and pray it helps her and all the INAD kids in some way.

But the trip wasn't all work any no play. We managed to stop at some really fun restaurants along the route. Kyle is always partial to the Pennsylvania-based Primanti Brothers chain, and one night, we visited a Japanese hibachi restaurant for sushi that was so much fun.

We also had a chance to meet other members of the INAD community, as we had lunch with the Panwala family. Their oldest daughter, Ariya, also has INAD like Grace. Although we are part of an INAD Support Group on Facebook, we've never actually met any other children or parents. It was fun to connect, and we enjoyed the special visit. Also joining us was Barbara, whose grandson, Leo, is affected by INAD. Although it's definitely not a journey anyone would pick, we truly have met some very special people along the way. And for that, we will always be grateful.

As we crawled into our nice and cozy bed this evening, we are very happy to be home, and excited for this new opportunity. We will take Grace back to New Jersey in February, where she will have a chance to try the drug as well. We're not sure what type of results she will see, but we're so glad to take a chance on Grace.