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.

Turning Obstacles into Progress: Our Recent Trip to PHL ✈️💙For three years, traveling back-and-forth from Charlotte to t...
06/18/2026

Turning Obstacles into Progress: Our Recent Trip to PHL ✈️💙

For three years, traveling back-and-forth from Charlotte to the Children's Hospital of Philadelphia (CHOP) for TJ’s medical care has been one of the hardest things our family does. Navigating airports with a custom wheelchair is often exhausting, and we have faced our share of frustrating, negative moments regarding disability rights and accessibility.

But this past trip was different. Instead of just accepting the status quo, we were determined to advocate for real change. TJ’s dad, Tim Johnson, connected directly with the Director of Customer Care at PHL and leaders from American Airlines.

We sat down with their executive team to share our experiences- not to complain, but to collaborate. And they truly listened.

Instead of offering empty apologies, they showed us the actual work they’ve been doing to build a “curb to cloud" customer experience for travelers with mobility devices. They are implementing new procedures, creating clear signage (like blue bollards and window clings so families know exactly where to go), and asking for our direct feedback to make sure they get it right.

To top it all off, they even threw TJ an incredible birthday celebration in their office! 🎉 (The photos say it all!)

We are so incredibly grateful to the team at American Airlines PHL for showing up, listening, and genuinely committing to doing better for the disability community.

-🎂 A Special Request for TJ’s Birthday & My Husband's 40th

TJ fights hard every day against DEGS1, an ultra-rare form of leukodystrophy with fewer than 100 cases worldwide. CHOP is the lifeline that keeps him moving forward, which is why these flights matter so much to our family.

For my husband's 40th birthday, we are on a mission to raise $40,000 for leukodystrophy research at CHOP by July 26.

If you want to help us build a better, more accessible world and support life-changing research for kids just like TJ, please consider donating or sharing our link below. Every single bit of support matters.

👇 Donate to the CHOP Foundation here:
https://chop.donordrive.com/campaigns/40-for-40

I wanted to share a quick update after our trip to CHOP ❤️Once we finally made it to Philadelphia and got settled, thing...
06/14/2026

I wanted to share a quick update after our trip to CHOP ❤️

Once we finally made it to Philadelphia and got settled, things went really well. It ended up being a long day after missing our first appointment due to travel delays, but the team worked hard to rearrange schedules and make sure TJ was still able to be seen for the most important parts of his visit.

We did have to cancel our NJ orthopedic appointment, which was disappointing, but thankfully we’ll be able to reschedule. He had hip X-rays on site and everything looked perfect 😍

The biggest positive from this trip is that TJ continues to make encouraging progress on the trial medication. We’re seeing improvements in his memory, recall, language, and vocabulary, which has been so exciting to watch. They also drew several labs to continue tracking how the medication is working from the scientific side, and he’ll have another MRI in November to evaluate changes over the past year.

One of the harder parts right now is navigating the impact the medication is having on his immune system. His T cells remain very low, which has led to several additional medications to help protect him from infection. It’s become a lot for his little body, so we’re hoping to connect with the immunology team soon to see if there are ways to simplify some of his medications moving forward.

As always, we are grateful for the care TJ receives, for the progress we are seeing, and for everyone who continues to pray for and support our family through all of this ❤️

Today we celebrate our favorite boy turning 7 ❤️TJ is joyful, determined, brave, funny, loving, and stronger than most p...
06/12/2026

Today we celebrate our favorite boy turning 7 ❤️

TJ is joyful, determined, brave, funny, loving, and stronger than most people will ever understand. He faces so much with courage and continues to light up every room he rolls into with his smile, personality, and love for life.

He loves diggers, fire trucks, baseball, laughter, adventures, and the people he loves most. He teaches us daily what true strength, perseverance, and joy look like.

Watching him grow has been one of the greatest gifts of our lives. We are endlessly proud of the sweet, resilient, incredible boy he is becoming.

Happy Birthday, TJ. You are deeply loved and such a light in this world ❤️

We finally made it to Philly ❤️✈️And waiting for TJ after all of the travel chaos was the sweetest birthday surprise- me...
06/10/2026

We finally made it to Philly ❤️✈️

And waiting for TJ after all of the travel chaos was the sweetest birthday surprise- meet Cat Digger 🐱🚜

TJ has always dreamed of having a pet cat, and he’s loved these digger pajamas for years (even long after outgrowing them 😅). So for his birthday, we had his favorite PJs turned into a special stuffed cat he can bring along on all of our adventures.

Safe to say Cat Digger is already very loved 🥹❤️ Stay tuned for more Philly adventures with our pal, Cat Digger.

Travel update ✈️❤️We still haven’t made it to Philadelphia. After multiple delays in Charlotte due to a maintenance issu...
06/10/2026

Travel update ✈️❤️

We still haven’t made it to Philadelphia. After multiple delays in Charlotte due to a maintenance issue with our plane, and we’ve officially missed our first appointment.

Thankfully, TJ has been an absolute champ through it all- watching Paw Patrol, looking out the window, and patiently rolling with all the changes.

So thankful for a wonderful care team helping us quickly reschedule appointments. We’d appreciate continued prayers for safe travels and a smoother trip ahead ❤️

Asking for prayers for TJ and our family over the next several days as we travel back to Philadelphia and CHOP for appoi...
06/10/2026

Asking for prayers for TJ and our family over the next several days as we travel back to Philadelphia and CHOP for appointments ❤️

We’ll be spending time in the seating clinic looking at options for a new dining chair and walker, a full day in Leukodystrophy clinic for TJ’s 6 month trial medication check-in (labs, monitoring progress, and injections), traveling to NJ to meet offsite with his orthopedic surgeon from last summer to check on his hips, and hopefully meeting with immunology to continue discussing medications helping protect his immune system while on the trial.

We’ll be flying to Philly, driving to NJ, and soaking in lots of hospital time along the way. Big sister will be staying home and having fun at VBS with our church family while we’re gone.

We’d appreciate prayers for safe travels, good reports, minimal side effects, strength for TJ, and peace for all of us through the week ahead. And if all goes well… we may just sneak in a birthday trip to Diggerland to celebrate our boy turning 7 while on the road 🎉🚜

Thank you for continuing to love, support, and pray for TJ so faithfully.

What a special evening spent in Charlotte watching Banana Ball with the Firefighters vs. the Tailgaters! ⚾️🔥TJ was all i...
06/05/2026

What a special evening spent in Charlotte watching Banana Ball with the Firefighters vs. the Tailgaters! ⚾️🔥

TJ was all in cheering for the Firefighters- he even wore his fireman jacket and collected a few player autographs along the way. From meeting players, receiving an official Banana Ball baseball, and soaking in all the fun, it was such a memorable night for our family.

One of the most meaningful parts of the evening was meeting Marshall Shill from The Firefighters. He and TJ immediately connected, sharing such a special moment together. Marshall even offered to pray for our family and TJ’s health- something we won’t soon forget.

Moments like these leave us feeling incredibly grateful. Grateful for time together as a family, for experiences that bring so much joy, and for the opportunity to share TJ’s story and hopefully be a light to others along the way. ❤️

One year ago this week, we were headed to Philadelphia for TJ’s hip surgery and a month-long recovery.Today, we’re celeb...
06/04/2026

One year ago this week, we were headed to Philadelphia for TJ’s hip surgery and a month-long recovery.

Today, we’re celebrating the progress that followed. 💙

He has gained flexibility and movement, sleeps more comfortably, can curl his legs up on his own, and is back doing the things he loves—therapy, swimming, using his stander, and washing cars in his walker.

We’re so proud of how hard he works and so grateful for every milestone along the way. What a difference a year can make.

The end of May marks six months on the trial medication that is changing TJ’s life. 💙The journey hasn’t been without cha...
05/31/2026

The end of May marks six months on the trial medication that is changing TJ’s life. 💙

The journey hasn’t been without challenges. The medication has significantly lowered his immune system, leading to additional medications, more monitoring, and plenty of unknowns along the way.

But despite those hurdles, we continue to see growth that makes it all worthwhile. His language and vocabulary have expanded, his memory and recall have improved, and we’re seeing progress that gives us so much hope.

We know there is still a long road ahead, but today we’re celebrating six months of progress and the possibility that comes with it. We’re grateful for every milestone, every gain, and every day we get to watch TJ thrive.

We officially made it to summer break ☀️At the same time, we’ve also started settling into TJ’s new medication routine. ...
05/27/2026

We officially made it to summer break ☀️

At the same time, we’ve also started settling into TJ’s new medication routine. Over the next few weeks, we’ll be layering in four additional medications to help protect his body and immune system while his T-cell counts remain so low. The picture I’m sharing tonight doesn’t even include all of them yet, since we’re having to stagger the starts. This is his evening routine, with a different variation for the morning.

It’s a lot for such a little body. And honestly, sometimes it’s a lot emotionally too- keeping track of medications, timing, side effects, labs, and all the “what ifs” that come with trying to protect him as best we can.

But TJ continues to handle it all with so much strength and trust. No complaining, no fear- just his usual happy self taking it one step at a time.

He is such a trooper, and we are so proud of him. 💙

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