Celebrating Halloween Together

It's Halloween, and things are getting scary . . . 

Okay, so maybe not scary, but we did have a fun Halloween holiday.

Kyle and I always have some serious discussion when it comes to deciding what Grace will be for Halloween. After going through a variety of choices, like a mermaid or a truck driver (that one was Kyle's), we decided on one of Grace's favorite characters, Minnie Mouse. And we picked up her costume at Toys R Us one day when we were in Springfield for physical therapy.

Grace and her preschool friends at their Halloween party.

Grace's Halloween fun started just a few days before Halloween with a party for her preschool classmates.  We dressed Grace up in her costume, and she and the other kids in her class walked uptown to trick-or-treat at local businesses, including the newspaper office.  It was kind of cold that morning, so we sent Grace with a Minnie Mouse blanket, which covered most of her costume. After they got done on their walk, they enjoyed some Halloween treats in the classroom and watched "It's the Great Pumpkin, Charlie Brown."  I think she really enjoyed seeing all her friends in their costumes too.

Grace and her daddy being silly with Halloween treats.

The very next day marked Hillsboro's Halloween parade.  The chamber also puts on a trick-or-treat trail, where kids could visit local businesses in costume, but we opted just to do the parade this year.  Usually we stop by the newspaper office and Grace's physical therapist.

Our sweet little Minnie Mouse.

Family photo opportunity with Minnie Mouse.

Since Friday was such a pretty day, we walked from our house uptown in time for the parade route.  For the past two years, Kyle and I have built part of her costume around her stroller. And this year, we talked about making some big bows for Minnie's Bow-tique, but as we are in the middle of a home renovation project, we just didn't get that done.  It's also the reason we didn't get our pumpkins carved this year.  We even got a Finding Dory pumpkin carving kit and a pink flamingo pumpkin kit, but we will save them for next year.

Mommy and her favorite Minnie Mouse.

Hanging out with Grandma and Grandpa before the parade.

Because the weather was gorgeous, there was  huge turnout for the parade, and Grace loved seeing some of her preschool friends.  We walked along the parade route, and it was fun just to be together as a family.

It turned out to be a gorgeous Halloween weekend, and Kyle and Grace ended up riding with me to Litchfield to cover their Halloween parade on Saturday.  We didn't dress Grace up, but she still managed to get some candy from some people in the parade. As it gets harder and harder to put Grace in and out of her car seat, we decided against actually going trick-or-treating this year. Sunday was paper day, so Grace hung out in Raymond with Grandma Kim and PaPa Randy, who live out in the country and don't really get trick-or-treaters. Although Kyle did tell his mom that he put on Facebook Grace would be waiting to greet trick-or-treaters at their house.  I think he was only kidding though.

Grace got some candy at the Litchfield parade.

With our house in disarray, mom and dad invited us to dinner at their house on Halloween and to greet trick-or-treaters. After a delicious steak dinner, Grace got some new pajamas for Halloween, and we settled in to feed her.  Mom and dad greeted the kids as they came to the door, inviting in ones that knew Grace. Several from her class stopped by to say hi, and she really liked all the attention.

Grace loved visiting with her friends when they came to trick-or-treat.

Reading a new Halloween story with Grandma Susie.

Before long, it was time to go home, as another Halloween was done. Even though we didn't get our pumpkins carved, we still enjoyed celebrating together. We can't wait for next Halloween!  Kyle is already coming up with costume ideas that Grace can do with her baby sister. We will never let INAD slow us down from making memories together.

mlh

Another Grace-Filled Donation

One of the first contacts we made after Grace was diagnosed with INAD was to the NBIA organization. NBIA stands for Neurodegeneration with Brain Iron Accumulation, and their headquarters is located in Portland, OR, under the direction of Dr. Susan Hayflick.

Actually, it was our geneticist at Children's Hospital that made the initial contact for us.  When I contacted the NBIA, they already knew who we were, which was a nice transition for us in a very scary time.  I spoke on the phone to Allison Gregory, who works with Dr. Hayflick. She took some of Grace's information, and talked to me more about INAD and what it meant for our family.

We have kept in touch with Allison and the NBIA over the last few years, and this summer, she asked about some of our fundraising efforts. I told her we had been blessed to live in a very generous community, and that we had been able to raise around $130,000 in the two years since Grace has been diagnosed.

Grace was SO excited to help out with the OHSU natural history family study.

Most of that funding (around $100,000) has been donated to Washington University in St. Louis, MO, to Dr. Paul Kotzbauer. He and his research team are studying potential treatment options for children with INAD.

In the course of our conversations, Allison told me the NBIA was applying for a grant to start a natural history family study for PLAN families (and INAD is a type of PLAN). PLAN stands for PLA2G6 neurodegeneration, which refers to the gene that is affected. When it presents itself in infants and toddlers, it's known as INAD.

Allison and Dr. Hayflick were applying for a grant with the FDA, but were looking for the support of INAD families to get started, and they knew our INAD family community was strong. In the past three years, INAD families all over the world have raised more than $500,000 and have funded two research studies.  She said they were asking for the INAD families to pledge $30,000 for the next three years to get the study started, and they hoped to supplement the research with the FDA grant.

What this study will do is gather data and information, and lots of it about the INAD kids and their families. With two active research studies, the group wants to be ready for clinical trials when the time is right.  After talking to two of the other moms, we decided this was something we definitely wanted to get behind.  Our iCan for INAD crowdrise online fundraising account had close to $13,000 in it that we thought would be a good start. I said that Kyle and I had about $28,000 from A Grace Filled-Journey, and that we would fill in the remainder.

Dr. Hayflick and her team at OHSU, and they are grateful for the donation too!

So, this week, Grace and I got a cashier's check for $17,500, and mailed it to Dr. Hayflick at the Oregon Health and Science University in Portland, OR. It felt really good to be able to jump in and send funding when it was truly needed. Thanks to all of our generous followers, the NBIA will be able to get started on this study immediately.  We still hope and pray that the FDA grant funding comes through, and they should hear in December.

Kyle and I are still planning to financially back Dr. Kotzbauer and his work at Washington University. He will finish up the second year of his study in the spring, and is excited that he and his research team continue to make progress. They should be able to start screening some drugs in the coming months, and he plans to keep us updated on his funding needs.

From the bottom of our hearts, we could not be more grateful to each and every one of you that have donated to INAD research over the last two years. We want you to know what a difference your generous gift has made, and continues to make. Together we will #BeatINAD.

mlh

A Race 4 Grace

Several years ago, Kyle did a car care feature on Jason Williamson of Hillsboro, who does remote control car racing in the area. Last year, he invited us to come and watch him race one evening, as he was trying to raise more awareness for INAD. That particular night didn't work, but we promised to try and come this year.

Kyle designed the flyer for the race.

As the new season started, Jason asked if he could stop by to show Grace his car this year. He had selected a photo of Grace to run on the hood with our slogan "A Grace-Filled Journey." It was a fun evening of visiting, and Jason told us he was working on a fundraising event for INAD research.  Plus, his car looks awesome with Grace's photo on it!

We couldn't wait to see Jason when we got there!

After looking ahead to the fall, Jason asked if we could come to Slideways RC Raceway at the Fayette County Fairgrounds in Brownstown on Oct. 22, so we put it down on our calendar.  Kyle helped Jason to create a flier for the event, and we did some publicity in the paper. 

Someone was SO excited for her special day!

The morning of the race, we set out a little early so we could make sure and arrive before the races officially started at noon. Jason was going to drive his car in the official start lap while the National Anthem played, and he wanted Grace to help him drive it.

All the cars lined up before the race.

All smiles before the races began!

Although it's the norm for us to run a bit late, we arrived around a half an hour early, and enjoyed visiting with Jason and one of the organizers, Josh, who showed us around the racetrack. They ended up with about 30 remote control race cars in a variety of classes, and as they got set up, we got settled into our seats by the side of the track.

These are Jason's cars for the big event.

Organizers lined up all the participating cars for a photo before the start of the race, and then Kyle and Grace went over to one side so Grace could help Jason drive his car during the National Anthem lap. Kyle helped to hold Grace up a bit, and Jason helped her steer as the song played.  Kyle said that she just giggled and cooed the whole time.

Grace loved helping to drive the car during the National Anthem.

As the qualifying laps started, we settled into our lawn chairs to watch the cars. It was really neat to see them, and although the drivers made it look easy, I'm pretty sure i would wreck at the first corner.

Jason gave Grace a picture of her car with the date of the event.

After a bite to eat for lunch, including some awesome kettle corn, we switched places, and Grace promptly fell asleep on my lap for part of the afternoon. I definitely enjoyed the snuggles as we watched all the races.  And we especially loved when Jason's heats came up so we could see Grace's car go round and round the track.

Mommy got some snuggles at the race too.

Although the races went well into the evening, we got ready to go after the first qualifying heats were finished. We gathered up our stuff and made our way to the table where Jason was working on his car to give our thanks and say goodbye. Then we stopped by to say thanks to Josh, and he presented us with $650 in donations to INAD research from the day. We were completely blown away, and so humbled by the generosity of the racers and the event organizers. Kyle took Grace up front and talked a little about INAD and what their donations would mean to the research.

Kyle told the racers about INAD research.

Jason also presented Grace with a framed photo of his car racing with the date of A Race 4 Grace on it, and we can't wait to hang it up in our home.  

We are SO grateful to everyone who helped make the event a success!

It was such a special day for our family, and we are always grateful for a chance to share Grace's story and raise more awareness for INAD. Thanks to all the racers and organizers for their support, and we hope to be back to see the cars race again soon.

mlh