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.

We have a busy week ahead as we continue moving forward in this journey. Tomorrow, we’ll travel back to Brenner’s for an...
12/07/2025

We have a busy week ahead as we continue moving forward in this journey. Tomorrow, we’ll travel back to Brenner’s for an appointment with a genetic neurologist our CHOP team recommended so we can build more local support for TJ.
Then Friday, we head back to CHOP for follow-ups with his orthopedic surgeon and rehab team, as well as a check-in with the lead doctor overseeing his drug trial.
We’re grateful for the continued care surrounding him and for every hand helping guide his steps. Thank you for walking with us, your prayers mean more than you know. 💛🙏

12/05/2025

Public service announcement from TJ- “Good. I am feeling good!” 🙏🏼🥰🩵

A quick update on our brave boy: TJ spent the day in the ER at Brenner Children’s Hospital for evaluation after some con...
12/04/2025

A quick update on our brave boy: TJ spent the day in the ER at Brenner Children’s Hospital for evaluation after some concerns arose overnight. We don’t have all the answers, but think he had a seizure. We are grateful for your prayers as we navigate the days ahead, schedule follow up appointments for next week, and navigate this new path as his parents; trusting our care team and God’s plan for TJ.

Today we’re thankful for small victories, steady progress, and the joy God continues to pour into TJ’s journey. Happy Th...
11/27/2025

Today we’re thankful for small victories, steady progress, and the joy God continues to pour into TJ’s journey. Happy Thanksgiving, from our family to yours 🤎🧡

11/26/2025

Tonight TJ helped empty the dishwasher — one of his favorite chores! Watching him carefully sort and put away the silverware is such a beautiful reminder that even when tasks take more time, effort, and patience… he never lets that stop him.
His determination, joy, and willingness to help shine so brightly.
We’re so proud of our sweet boy and the big heart he brings to even the smallest moments. 💛✨

🌟 Sister Spotlight: Nora 🌟There’s a special kind of love that only siblings share, and the bond between TJ and his big s...
11/23/2025

🌟 Sister Spotlight: Nora 🌟
There’s a special kind of love that only siblings share, and the bond between TJ and his big sister, Nora, is something truly extraordinary.💛

Nora is so much more than a sister. She’s TJ’s cheerleader, advocate, protector, and built-in best friend. She encourages him when things get hard, includes him in everything she can, and stands up for him without hesitation. She notices his needs before anyone else and steps in with a tenderness far beyond her years.

She helps care for him, celebrates every win alongside him, and even joins in on goal-setting to help him get stronger. Whether they’re working hard together, plotting something silly, or laughing freely like only siblings can, Nora is his safe place, and he is hers.
Their bond is one of a kind, and we’re so grateful for the way she loves him so fiercely and so well. 💛
Sharing a sweet picture of the two of them- conspiring, giggling, and simply being the perfect pair they are.

We wrapped up a very good day at the hospital and slipped away this afternoon for a quiet celebratory evening- complete ...
11/17/2025

We wrapped up a very good day at the hospital and slipped away this afternoon for a quiet celebratory evening- complete with dinner at one of our favorite spots. 💛

TJ’s vitals held strong, and his body handled the first dose of the new medication beautifully. We couldn’t have asked for a better start.

Now we look toward the future with hope, continuing to pray for steady tolerance and minimal side effects. This drug comes with a long list of things to watch over time, so TJ will have regular monitoring every few months- but today, we’re grateful. Today was a win.

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!

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