TJ's Journey: Built on Love

08/06/2026

Earlier this month, our local paper shared our family's story through the lens of Tim's 40 for 40 campaign, and reading it reminded me just how much can change in a year.

This journey has stretched us in ways we never could have imagined. It has taken us from uncertainty to answers, from countless appointments to a care team we trust, and from simply trying to survive each day to finding purpose in sharing TJ's story.

When Tim started his 40 for 40 challenge, it was never just about turning 40 or reaching a fundraising goal. It was about creating hope- for TJ, for future families facing leukodystrophy, and for the research that has already changed our son's life.

Looking back, we're overwhelmed by the kindness we've experienced. Every prayer, donation, message, conversation, and act of support has reminded us that we are not walking this road alone.

We're so grateful to IFN for sharing our story, but even more grateful for a community that has chosen to stand beside our family.

The story is still being written, and we have so much hope for what tomorrow holds. 💙

07/28/2026

Grateful beyond words 💚 thank you for all your support through this campaign, the future is bright!

Our President Tim took on the 40 for 40 challenge to raise money for leukodystrophy research at Children's Hospital of Philadelphia. His son TJ was diagnosed with DEGS1, an ultra-rare form of leukodystrophy. There's no cure yet, but there is active research, and research needs funding to move forward.

Thanks to this incredible community, we raised well over $40,000, making this the top fundraiser for CHOP this year. The team at CHOP now have more resources to keep pushing toward answers for TJ and for every kid fighting.

Thank you to everyone in our community who gave, shared, and supported this cause. 💚

07/25/2026

Research saves lives 🩵

Six months. 10,000 steps a day. One reason: his son. 💚

Our president Tim Johnson turns 40 this year, and instead of a party, he chose a mission. His son TJ was diagnosed with DEGS1, an ultra-rare form of leukodystrophy with fewer than 100 confirmed cases in the world. Since January, Tim has walked every single day and worked to fund leukodystrophy research at Children's Hospital of Philadelphia.

The campaign ends this Sunday, and we're asking our community to help him finish strong. Every dollar goes toward research that brings families like his closer to real treatments and, one day, a cure.

Join and give what you can before Sunday: chop.donordrive.com/campaigns/40-for-40

07/25/2026

Today, Facebook reminded me of a moment from six years ago.

TJ had just turned 1. He was standing proudly in his room, looking at the bookshelf, completely unaware of how much that simple moment would one day mean to me.

When I look at that picture, I don't just see my little boy. I see *before.*

Before the diagnosis.

Before we knew what was coming.

Before the questions, the appointments, the surgeries, the medications, and the uncertainty.

Before the subtle signs began to appear.

Life has a way of dividing itself into chapters you never asked for. For me, there is a very clear "before" and "after."

The "after" has been filled with things I never imagined we’d have to carry. Trauma became real. Fear found a place in our home. A sense of urgency settled into my heart, reminding me that tomorrow is never promised.

But something else grew there too.

Perspective.

The little things became the big things. Giggles became priceless. Ordinary moments became extraordinary gifts. I learned to celebrate victories that others might never notice. I stopped taking today for granted.

Most of all, I discovered a fiercer version of motherhood than I ever knew existed. The kind that fights relentlessly, hopes endlessly, grieves honestly, and loves without limits.

I miss the innocence of "before." I think a part of me always will.

But I am incredibly grateful for the joy we've found in the "after."

Because while this journey has changed our lives forever, it has also taught us to truly see them.

So today, I'll hold that little one-year-old in my heart with gratitude. And then I'll look at the amazing little boy he is today, with all his courage, all his laughter, and all the love he continues to teach us- and I'll be thankful for every single moment we've been given.

07/19/2026

What an incredible weekend! 🏁💙

Today we got to cheer on our new favorite driver, Stewart Friesen, and the No. 52 and No. 62 teams at North Wilkesboro- and TJ and Nora had an absolute blast!

We're so thankful to Halmar Friesen Racing for welcoming us with such kindness and helping raise awareness for leukodystrophy. The memories made this weekend will stay with us for a long time.

We'll be cheering for the No. 52 long after the checkered flag. 💙🏁

07/15/2026

Today we had the incredible opportunity to spend time with the amazing team at Halmar Friesen Racing and meet Stewart Friesen and the entire crew behind the No. 52 truck.

TJ got a behind-the-scenes tour of the shop, met the crew, saw the race trucks up close, and even helped place a Team TJ sticker- featuring his photo and raising awareness for leukodystrophy- on both the No. 52 and No. 62 trucks.

As parents, moments like these mean so much. Not only because they create unforgettable memories for TJ, but because they shine a light on a disease that so few people have ever heard of. Every conversation, every sticker, every person who learns TJ's story helps spread awareness and gives us another opportunity to advocate for children like him.

To Stewart, Brett Reckert, the crew, and everyone at Halmar Friesen Racing- thank you for opening your doors, sharing your time, and using your platform to stand alongside Team TJ. Your kindness and support mean more than words can express.

Be sure to cheer on the No. 52 truck this weekend in North Wilkesboro! We'll be cheering extra loud. 🏁💙

07/05/2026

Some of the brightest lights don't come from fireworks.

Sometimes they come in the form of hope.

This Fourth of July, we're reflecting on how grateful we are to live in a place where innovation, research, and world-class medical care give families like ours reason to hope. For us, that hope looks like dedicated doctors, groundbreaking research, and the compassionate use drug trial that TJ is part of today.

None of this is something we'll ever take for granted.

This weekend, we're thankful for the freedoms we enjoy, for the people who have sacrificed to protect them, and for the God who continues to carry our family through every season.

Happy Fourth of July from Team TJ ❤️🤍💙✨

06/30/2026

Earlier this month, our family had the privilege of speaking with the SiteOne Landscape Supply team in support of the 40 for 40 campaign, and we were grateful for the chance to share not just the campaign, but the story behind it.

We introduced TJ and his big sister, talked about our walk at Children's Hospital of Philadelphia, and shared the moments that have shaped us and the reason this campaign matters so deeply to our family. It was one of those conversations where we got to simply sit in TJ's story and share it with people who wanted to learn more.

Being trusted with a platform to speak for our son- and for other children and families living with leukodystrophy, is one of the greatest honors we've experienced through this journey. This disease is rare, and awareness is everything. Every conversation like this one moves us a little closer to something better for kids like TJ, and for the families walking a road like ours.

We are so grateful to SiteOne and to everyone who continues to support this campaign. You are part of something that matters more than any of us can fully see right now.

06/26/2026

When Tim decided to mark turning 40 by raising $40,000 for leukodystrophy research at CHOP, I wasn't surprised. That's just who he is. And today, SiteOne Landscape Supply is making every dollar count twice.

TJ is our why- for all of it.

He has DEGS1, an ultra-rare form of leukodystrophy with fewer than 100 known cases in the entire world. He is the first child in the United States on a compassionate use drug trial for this condition, cared for by an extraordinary team at Children's Hospital of Philadelphia. Research is the reason that trial exists. Research is the reason we have hope.

👉 chop.donordrive.com/campaigns/40-for-40

Tim set out six months ago to walk 10,000 steps every single day and raise $40,000 by his 40th birthday. What started as a personal commitment became something so much bigger- because that's what happens when a community decides to show up.

Today is match day. Every donation made today is matched dollar for dollar by SiteOne Landscape Supply. Your $25 becomes $50. Your $100 becomes $200. We are so close to our goal, and today could be the day we get there.

If TJ's story has touched you, if you've cheered for him or prayed for him- this is a tangible way to fight for him and for every other child in the world living with leukodystrophy.
Link in the comments. Share this post. It all matters more than we can say. 💙
"Thank you for helping kids like me!"- TJ
Jenni, Tim & TJ

06/26/2026

Many of you have followed TJ's journey and know that his dad Tim launched the 40 for 40 campaign earlier this year- a personal commitment to walk 10,000 steps every day for six months and raise $40,000 for leukodystrophy research at Children's Hospital of Philadelphia by his 40th birthday. It has been an incredible ride, and we are getting close.

Tomorrow is a big day for .

SiteOne Landscape Supply is hosting a match day for the 40 for 40 campaign, and every donation made tomorrow will be matched, doubling the impact for leukodystrophy research at CHOP.

TJ is one of fewer than 100 children in the world with DEGS1. He is the first child in the United States on this particular drug trial. The team at Children's Hospital of Philadelphia is fighting for him every single day and research is what makes that possible.

We'll share the donation link tomorrow morning- because on match day, every dollar counts double. Tonight, share this post and help us spread the word. 💙