James' Journey

09/11/2025

Few people know that we have been aware of an upcoming clinical trial for gene therapy for James's specific gene mutation. It felt hopeful, surreal. It felt scary too. Today all that hope came tumbling down...
The weight of the medical decisions that we have to make for James has been, by far, one of the heaviest loads we had to carry on this journey. Our hearts go out to the family who lost their child all while hoping for a cure.
Meanwhile, we are so grateful that James is ok, we are ok. We continue to celebrate James's uniqueness and are so grateful for having him in our lives. He brings us all so much light!

09/06/2025

Join us for this year's walk to honor our little superhero, James:
https://runsignup.com/allin4james
Where: The roundabout by the airport
When: Sept. 27th @ 9:00AM
Thank you!

08/08/2025

07/18/2025

Yay for Multidisciplinary and Special Care Clinic day!

07/04/2025

Happy 4th of July!

06/22/2025

200.000 steps and counting...

03/22/2025

Spring is here! We love the daily walks!

11/14/2024

100.000 steps! 100.000 steps for a wheelchair bound little boy turned into 100.000 memories made with his siblings, countless rounds of "monster chase" games, races, family walks and our daily reminder that joy shimmers in the smallest things we do. And joy always shimmers in this little boy's eyes every evening when he is set to go on his walk.

Here are a few highlights of the progress that James made in his Trexo in the last 6 months:
- Walking in his Trexo for up to 40 minutes per session
- Increased resistance (the robot works less and James works more) for the first part of his walking sessions
- Increased average step initiation from under 20% to over 40%, sometimes low 50s.
- Removing the seat and having James support his own weight during his walks.

None of this would have been possible without the support of our community. From the bottom of our hearts, THANK YOU!

Montana Hope Project
Trexo Robotics

09/22/2024

Thank you to everybody who came to support our boy during this year's Move to Cure STXBP1 event.

09/22/2024

This is James during his Move to Cure STXBP1 event, 2024, Montana. This year has been extra special for us, because James got to walk in his Trexo. Otherwise wheelchair bound, James continues to amaze us with his progress, exemplar work ethic and fighting his fight quietly but fiercely, always with a smile on his face. We are honored to be part of the STXBP1 community and grateful supporters of the STXBP1 foundation in all its efforts towards finding a cure.