TJ's Journey: Built on Love

TJ's Journey: Built on Love We created this space to share TJ’s health journey with our friends, family, and community — the highs, the challenges, the milestones, and the moments of joy.

This page is dedicated to our amazing son, TJ- a brave, funny, construction-loving little boy who is living with a rare genetic condition called DEGS1, a type of leukodystrophy. Welcome to TJ’s Journey: Built on Love 💛

This page is dedicated to our amazing son, TJ — a brave, funny, construction-loving little boy who is living with a rare genetic condition called leukodystrophy. It’s a place where we can keep everyone updated, raise awareness about leukodystrophy, and most importantly, celebrate the strength and spirit that TJ shows every single day. He may be small, but he’s mighty — and just like the diggers and bulldozers he loves, TJ is moving mountains with love, support, and courage. Thank you for being here. 💛
Your love and encouragement help us build a foundation of hope — one day, one smile, and one post at a time.

Today is a milestone we’ve been praying and fighting toward- TJ took his very first dose of the trial medication! 💛✨Here...
11/17/2025

Today is a milestone we’ve been praying and fighting toward- TJ took his very first dose of the trial medication! 💛✨
Here’s to a brighter tomorrow, new hope, and the possibility of a longer, fuller, joy-filled future for our sweet boy.
Big step. Big courage. Big prayers answered.
Thank you for celebrating this moment with us!

After a long night of flight delays and unexpected detours, TJ is finally settled in and resting peacefully ✨ Even with ...
11/17/2025

After a long night of flight delays and unexpected detours, TJ is finally settled in and resting peacefully ✨ Even with the bumps in the road, our hearts are steady and full of hope.
Tomorrow brings a brand-new step in his journey, one we’ve prayed for, waited for, and worked toward for so long. The horizon feels a little brighter tonight, and we’re holding onto the excitement of what’s ahead.
Thank you for loving our boy and walking this road with us. 💛

✨ Big News! ✨After months of waiting, praying, and trusting God’s timing- we have official approval for TJ’s drug trial ...
11/12/2025

✨ Big News! ✨
After months of waiting, praying, and trusting God’s timing- we have official approval for TJ’s drug trial and a date for his very first dose! 🙌

This weekend, our family will travel to the Children's Hospital of Philadelphia, where TJ will be admitted for day treatment on Monday. He’ll receive his first dose of the medication under close monitoring as his team watches for any potential side effects that may come with the initial dosing.

We are filled with hope and gratitude as we take this next big step forward. We can’t wait to see how God will continue to work through TJ’s incredible medical team, and through this trial, to tell of His goodness and faithfulness. 💙

Please continue to keep TJ and his team in your prayers as this new chapter begins! 🙏💫

Just scootin’ through the week! 🛴💛Even when the journey feels long and the waiting stretches on, we keep moving forward-...
11/06/2025

Just scootin’ through the week! 🛴💛
Even when the journey feels long and the waiting stretches on, we keep moving forward- one push, one smile, one joyful ride at a time. TJ’s reminding us that there’s always room for fun along the way!

🎳 Strike up some smiles! 🎳Today TJ had a fantastic time at Special Olympics Bowling with his school! Watching him shine ...
10/31/2025

🎳 Strike up some smiles! 🎳
Today TJ had a fantastic time at Special Olympics Bowling with his school! Watching him shine and celebrate with his family made the day even more special. 💙

We’re so proud of his determination, joy, and the way he continues to roll through life with courage and heart. 🫶

🌟 One Step Closer! 🌟Every call is another step closer to answered prayers. After one initial denial (that CHOP quickly a...
10/27/2025

🌟 One Step Closer! 🌟
Every call is another step closer to answered prayers. After one initial denial (that CHOP quickly appealed 🙌), we officially have insurance approval for TJ’s clinical drug!
The next step is securing approval for day treatment, where he’ll receive his first dose. We’re keeping our fingers crossed that things continue to move quickly—and in the right direction! 💙
Our hearts are full of hope as we look toward early November to begin this next chapter. Thank you for continuing to pray and believe alongside us—God is truly at work! 💪✨

10/18/2025

💫 “The best communities are built where everyone can join in on the fun.” Inclusion for the win! 💙 Statesville Country Club

Taking Life One Pitch at a Time ⚾️Tonight was TJ’s last game with the Yankees, and as always, he gave it his all! 💙Even ...
10/18/2025

Taking Life One Pitch at a Time ⚾️
Tonight was TJ’s last game with the Yankees, and as always, he gave it his all! 💙
Even when life throws a curveball, TJ shows us how to make the most of it- with determination, joy, and that unstoppable smile. Life with his disease brings ups and downs, but TJ continues to knock it out of the park, one pitch at a time💪

💃🏻🕺🏼Dancing with Joy! 💙We’re dancing with joy today! TJ’s medical team has reached a consensus on his drug trial dosage!...
10/16/2025

💃🏻🕺🏼Dancing with Joy! 💙
We’re dancing with joy today! TJ’s medical team has reached a consensus on his drug trial dosage! 🙌 This means we’re officially moving forward with the next steps: scheduling and submitting everything to insurance.

Each milestone in this journey brings us closer to hope- and today, we celebrate this incredible progress with thankful hearts and joyful moves (just like TJ dancing with one of his favorite helpers at school!). 💫

We are so grateful for every prayer and bit of encouragement along the way. The road is long, but hope is alive and moving - one step (and dance!) at a time. 💙

Children's Hospital of Philadelphia Molly Grantham

⚾️ Home Run Energy! ⚾️Another great game for TJ and the Yankees! He had the crowd on their feet today — convincing his b...
10/11/2025

⚾️ Home Run Energy! ⚾️
Another great game for TJ and the Yankees! He had the crowd on their feet today — convincing his buddy to steal the bases after his big hit, turning it into a home run! 🙌

He also had an amazing cheer section, including his big sister’s third grade teacher! 💙

These Miracle League moments remind us that joy, teamwork, and community make every inning count. Go Yankees, go TJ! 💪✨

A Step in the Right Direction ✨Today, we received the phone call we’ve been waiting for. TJ’s leukodystrophy team shared...
10/09/2025

A Step in the Right Direction ✨
Today, we received the phone call we’ve been waiting for. TJ’s leukodystrophy team shared that the drug they’ve been advocating for has been approved.

As with all things in this journey, the process is still complicated. There are details to work through before the trial can officially begin, especially around the logistics of the drug and the right dosing for TJ’s body. While this is a huge step forward, the waiting isn’t over- we’re just moving ahead one faithful step at a time in the right direction.

Waiting is hard. The unknown can feel heavy. But we are learning, again and again, that God is in every pause and every detail. He continues to move in ways we can’t always see, and we trust that His timing is perfect.

To our friends, family, and everyone who continues to lift TJ and our family up in prayer- thank you. You help carry us through the highs and the lows, the joy and the uncertainty. Please keep praying as we continue walking this path with faith, patience, and praise for all that God is doing in and through TJ 💙

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