Chip’s Army: Fighting Against CLN3 Batten Disease

09/14/2026

Today is Chip’s 6th birthday!

As you have probably figured out, we consider ourselves friends of Jack, and big supporters of this organization.

If you’d like to celebrate Chip with us today, please consider donating $6, $9, or $14 in honor of his birthday! I promise, it’s worth it! 🩵

North Texas Giving Day is here, and YOU can make a difference for families who need it most.

At Jack’s Thousand Days, our mission is to stand beside Texas families navigating life-altering and medically complex diagnoses—helping with the needs that can become overwhelming when a family’s focus needs to be on their child.

From medical equipment and therapy to helping keep a roof over a family’s head, more than 90% of donations go directly toward supporting the families we serve.

This North Texas Giving Day, we’re asking our community to show up for them. Whether it’s $10, $50, $100 or more, every gift adds up and reminds these families that they don’t have to face the unimaginable alone.

🦈 Donate today: https://www.northtexasgivingday.org/organization/jacksthousanddays

Give with purpose. Give with heart. Give for the families whose lives can be changed by your generosity. 🩵

09/12/2026

A well-connected family’s fight to access a potential treatment for their son highlights the barriers most rare disease patients struggle to overcome.

08/22/2026

Last week, kindergarten; this week, Iowa!

Chip had his first in-depth ophthalmology appointment this morning at the University of Iowa. Not much to
report really, other than things were pretty much as expected with this disease, BUT we are so proud of how brave he was and how well he pushed through over 3 hours of testing! And when I tell you, he loaded up on the prizes… I had to ask the lady at the front desk for a bag to carry everything to the car!

Fun fact, he loves corn on the cob, so we had to stop and show him what it looks like before he picks it out at the store. It was really beautiful in a way, especially as the sun was going down, and I understand now why everybody thought Ray Kinsella was crazy for destroying his crops for a baseball field!

Something the doctor said to us this morning has been bouncing around in my head ever since we left: it’s clear that Chip is here for a reason. I really think so too; I feel it in my bones. I pray every single day that a gene therapy or a “cure” of sorts or better treatment will come along at the just the right time to change his life, and the lives of many others. So if you’re wondering what our specific prayer request is now, that’s it.

It’s been a LONG road trip, but we’ve tried to make a little vacation out of it. We’re off to spend the weekend in Branson, and he’s got Digtown at the top of his list!

07/22/2026

If you own a business or know someone that does that would be interested in sponsoring this amazing organization, please pass this information along.

It’s been a little while and we have some new people here, so let me share with you just how impactful they are over at Jack's Thousand Days.

We were put in touch with Bonnie through a mutual friend the same day we shared our heartbreaking news of this diagnosis on Facebook. And let me tell you, she came to me like a force! Ready and willing to help us in any way, shape, or form, having lived through a Batten diagnosis for her own son, Jack, just a few years ago. I didn’t even know how I needed help at the time or what to ask for help with, but knowing I could call her with anything was such a comfort in a very unstable situation. A month or two passed by the time we learned that Chip’s medication would cost us $7,000 a month. I remember calling pharmacy after pharmacy, trying to find someone to get that number down, to no avail.

So I text Bonnie, and literally the next day? Done. ✅ Jack's Thousand Days paid for the first month and some change for him to get started on this VIP medication. It was in that moment that something kinda switched in my mind, like… okay we can do this. We’re going to fight for this.

So, we will always be big Jack fans here. Without sponsors and fundraising through this gala, they wouldn’t be able to help families like us and kids like Chip. I’d say that’s making an impact. 🦈

Businesses have the opportunity to do more than sponsor an event.

They can change a family's story.

We’re looking for local businesses and organizations to partner with us as sponsors for Jack’s Thousand Days Gala on September 12, 2026.

Your support helps provide hope, resources, and financial assistance to Texas families facing Batten disease and other childhood illnesses, ensuring they never have to face their journey alone. Together, we can create an unforgettable evening that raises critical funds and reminds families that their community stands beside them.

As a sponsor, you’ll also have the opportunity to:
✨ Connect with our community
✨ Showcase your commitment to giving back to your community
✨ Increase your visibility while supporting a meaningful cause
✨ Help us reach our goal of raising $250,000 for Texas families

Every sponsorship creates a ripple effect of hope. Together, let’s make waves for families who need us most. 💙

Become a sponsor & show your support🔗 https://jacksthousanddays.org/2026gala

07/01/2026

Please take the time to watch and share this video. Bonnie and Jack's Thousand Days have been a blessing to our family more than they know. 🦈

If you think you're having a bad day, put yourself in the shoes of ...

05/12/2026

We got a letter today, which prompted a call to the neurologist’s office. Turns out, the external review was denied, meaning we were essentially out of options aside from hiring an attorney.

However, four days later, that decision was OVERTURNED.

Yes, God OPENED that once-closed door!

What this means now is that we have coverage for his medication for 12 months at $250/month. After that coverage period ends, we will go back to paying out-of-pocket and fighting the insurance all over again for a new coverage period... a cycle that will continue every year until this drug is FDA approved to treat Batten Disease, specifically. So, please understand, if you see fundraisers in the future, that’s why. We don’t know how long we will have to play this game or how much the medicine will cost each year, but we can’t afford to have any interruptions in his treatment. Right now, this is the only shot we have at slowing down the progression of this awful disease.

This whole diagnosis in general has been extremely difficult to carry around everyday. We’re usually “okay” and can smile through it for Chip’s sake, but some days are better than others. We are tired but we will never stop fighting for him. I’m so proud of that, but I’m also incredibly humbled and grateful that God continues to open doors for us, even if they were closed just four days before.

We want to thank every single one of you that have donated to us, prayed for us, checked on us, and loved on Chip a little extra over the last few months. The support has been above and beyond anything we could’ve ever imagined. Even total strangers from opposing teams have cheered him on at his baseball games. It’s amazing to see how his story is impacting the hearts of people we don’t even know. I just know God has something really special planned for him and I’m thankful you all are here to watch it unfold with us.

05/06/2026

Need a new shirt to wear next time you go to Roadhouse? How about this one? And June 9th sounds like a great day for some steak!

Zellie Blue has graciously offered to donate all of the proceeds from these shirt sales to Chip’s medical fund.

These can be picked up at either the Pottsboro or Durant location, or they can be shipped directly to you!

Thank you, Leslie and team Zellie Blue!

Just a reminder, the Texas Roadhouse online gift card sale ends this Monday, May 11th and the Dine to Donate event is June 9th at the Sherman location. See separate post for details.

Thank you for continuing to support our family! We love you, Chip’s Army!

T shirts will be a poly cotton blend with a direct to film image.

04/27/2026

It’s been really humbling to have received so much support from our friends, family, and community throughout this whole journey… as I’ve said many times before, we can never thank you all enough for showing up for us in all the various ways that you have.

What has been even more amazing to experience is the support we’ve received from people we don’t even know. I have a handful of stories that would absolutely blow you away. This is one of them.

A few weeks ago, we received a call from the pastor of Gunter Valley Church of Christ, a church we’ve never been to. A woman from his congregation that we’ve never met sent our story to him as a candidate for their Annual Singing and Fundraiser event, and after some discussion, they decided we were a great fit.

We still can’t believe all the ways God continues to provide for Chip in the most unexpected ways. Thank you so much, Gunter Valley Church of Christ. We are incredibly grateful for your support!

Valley Church of Christ is hosting its Annual Singing and Fundraiser on Saturday, May 2, at 6:00 PM. This year, the evening is dedicated to the Chambers family — and… Continue reading Annual Singing and Fundraiser for the Chambers Family — May 2

04/13/2026

We have partnered with the wonderful Jack's Thousand Days organization for an Online Gift Card Fundraiser (April 14-May 11) and Dine to Donate event (June 9) at Chip’s favorite place, Texas Roadhouse!

June 9th is International Batten Disease Awareness Day. I don’t know that I’d use the word “celebrate” to describe what I’ll be doing that day… but I can’t think of anything better to eat my feelings with than cinnamon butter and rolls. 🤪

Gift cards can be purchased here: https://txrhgiftcards.com/products/texas-roadhouse-fundraising-gift-card-10-100-region-2?ref=247JacksThousandDays04092026

They will be sent to your email one week after the fundraiser closes out on May 11th. You can use your gift card on June 9th to support in person, or if you can’t attend, no worries—your gift card can be used anytime and at any other location!

For the Dine to Donate Event, you must show the flyer or tell your server the night of the event for our fundraiser to get credit for your purchase. This event is at the Sherman location only.

Both of these fundraisers have been added as Events on this page if you’d like to add them to your calendar.

A special thank you to Bonnie and her amazing team at Jack’s Thousand Days. If you’re looking to support a nonprofit, they’re an excellent choice!

04/06/2026

Chip got an extra special Easter package in the mail this week. The pop rocks were a big hit! Thank you so much, Team Super Sam!