Sawyer’s Race for Research

02/10/2026

😎 Eye check up with Dr. Reddy yesterday and we’re pretty sure he looked into his soul with those dilated eyes. 😆

But these baby blues are still doing well! Praise the LORD!

02/02/2026

February is Rare Disease Month! Here’s a few of our rare but mighty TFP zebra warriors! 🦓💪🦓

To those who don’t know or are new here, TFP stands for mitochondrial trifunctional protein deficiency. This disease is a fatty acid oxidation disorder that prevents the body from converting fats into energy → It affects the entire body, *currently has NO cure*, and no known living cases beyond age 32. There are less than 100 cases worldwide. Yes - you read correctly. LESS THAN 100. WORLDWIDE. We have been honored to connect with other TFP families across the world, spreading awareness about Sawyer’s story and helping fellow rare zebras get awareness and potential treatment options they desperately need and deserve. So this month, please take a minute to share Sawyer’s story and, if you feel inclined, donate to Sawyer’s Race for Research so we can help give him and kids like him a cure.

ALL proceeds go to TFP Research!

To make a donation, follow the link and click donate:
https://runsignup.com/Race/KY/ParkCity/RuntheMaple

12/25/2025

Merry Christmas to all and to all a GOOD night! 🎄🎅🏻🎁 Sending love to all those who are spending their Christmas in maybe ways they didn’t foresee. We are so grateful that we are home this Christmas and humbled by memories of when we weren’t. Sending light, love, and warmth to you all! ✨

Here’s to drifting into 2026 🏎️💨 😎

12/20/2025

A day in the life of TFP…

In the chaos of Christmas parties, packing to leave town, and getting our house ready to show, they call me that Sawyer had started “going at both ends.” 😭

Once I got him home and we started prepping for the Vanderbilt run, the doctors asked us to hold off and try to medicate to stop the puking while keeping him hydrated, while he continued on the “other end”.

We were one puke and one p**p away from making the dash… and then he started perking up and tolerated a small dose of his Dojolvi. Praise God! 🙏🏼

We hydrated, fed, and medicated every 2–3 hours through the night, and this morning got another dose in. Please pray we’re on the upward swing and can avoid the hospital.

❤️ Blessings:
• A school and friends who get how serious this is

• Taylor snagging the last flight home on one of the busiest travel days of the year

• ZOFRAN

• Family ready to jump in and change plans.

➡️• And realizing Sawyer’s emergency clothes are too small… because it’s been so long since he’s been admitted 🥹

Thank you for your prayers. We’re so grateful God is protecting Sawyer. 🤍

12/07/2025

📢‼️Shells by Sawyer CLOSING FOR THE WINTER! ‼️

Sawyer’s hands have started to really bother him with the cold weather setting in. His grip weakens, his strength weakness, and he drops things frequently.

So this is what he has finished up for this year! He hopes you like them! He collected a lot of these shells on our fall break trip. 🙂

Thanks for supporting him and his determination!

Will ship, buyer pays shipping!

*Disclosure… I am no hand model, please disregard my cracked nurse hands 😆

11/24/2025

This sweetness went to the neurologist last week and we got good news! He feels like Sawyer’s neuropathy hasn’t progressed and he is so much stronger!!

This is the FIFTH doctor in the last couple of months to notice how strong he has gotten. And many of you have been noticing too!

Dr. Vockley told us to get Sawyer as strong as possible before his body starts breaking down. So that’s what we are doing!

This sweet boy works hard for those muscles and that strength and I’m so proud and thankful!

💪🏼💪🏼💪🏼 Praising God for HIS continued protection!

11/06/2025

10/21/2025

💛SAWYER’s BIG UPDATE💛

We spent the day with many appointments yesterday and it was such an EXCITING DAY!

1️⃣The drug Elamipretide has officially been FDA-approved for another disease — giving Dr. Vockley hope it will soon be approved for TFP. Elamipretide helps the mitochondria make more energy — a game changer until gene therapy is ready. If it is not approved in the next few months, Sawyer will receive it on a compassionate-use basis within the next 6–12 months.

In the meantime, Vockley has already started developing an Elemeprotide 2.0 that may work even better and last longer.

2️⃣Dr. Vockley is also working on a new way to deliver Sawyer’s main medicine, Dojolvi, to make it gentler on his stomach and help stabilize his energy, and in PILL FORM! Woo hoo!

3️⃣The Biggest News Yet —

🎉🎉GENE THERAPY HAS STARTED! 🎉🎉
The cure for TFP/LCHAD is officially in motion.
This monumental step — made possible by another family’s donations, plus our help— is the ultimate goal and the hope we’ve all been praying for. It may still be five years away, but the work has begun.

In the meantime, Sawyer will soon have access to new treatments that can make every day easier and brighter!

💙♥️ Highlight of our day, was getting to meet John, Dr. Vockley’s oldest TFP patient, he has a very mild case, but it gave us SO MUCH HOPE! ♥️💙

Sawyer continues to defy the odds, with some of the most severe levels, yet he is doing so well for what he has. Praise GOD for that! The next 6 months to 5 years is going to SAVE LIVES!!

From the bottom of our hearts — thank you. Every dollar, prayer, and share has brought us closer to this moment. Please keep believing, praying, and sharing — the cure is truly within reach. 💛

10/02/2025

🎉 WOW… Year 5 of Run the Maple 5K is in the books and it was our BEST one yet!!

Because of YOU—our donors, sponsors, participants, volunteers, and cheerleaders—we raised a little over $60,000 for Sawyer’s Race for Research 💛 …and funds are still rolling in. This may just be our biggest year EVER! 🙌

From the tunes 🎶 with CrossFit Old School, to the ☕️ from Righteous Coffee Roasters, to the exclusive gear from Paddock Golf—you all helped make this such a special day.

Ándale Ándale 🤣🤷‍♂️
Here’s to blowing year 5 out of the water and pushing this cure forward faster than ever! 🦸‍♂️💥

09/27/2025

THANK YOU TO ALL WHO PARTICIPATED in the race, donated, or shopped the live auction!!!
🦸‍♂️🏃🏽‍♀️🏃‍♂️🏃🏿💨
We had a GREAT turn out today! We’d LOVE ❤️ to see your photos from today - both from our in-person and virtual participants! 🌎

Shout out to for the incredible handmade signs and to for our balloon arch in honor of her late grandfather, Wayne Smith ❤️. And huge thanks to for making treats for our volunteers and fat free donuts 🍩 for our super Sawyer and super Kieran! 🦸‍♂️🦸🏻

09/21/2025

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