Bind Up Batten Fund

11/24/2025

Yesterday Charleston turned 16!
We celebrated with family, friends, swimming, pizza, cookie cake and of course legos!
Today per request more Lego’s and we dyed his hair red. ❤️

In honor of our guy turning 16 please consider a $16 donation to Bind Up Batten Fund with Beyond Batten Disease Foundation to support more research and a cure.

11/05/2025

Charleston dancing to AC/DC

11/05/2025

Today we made an investment in Charleston’s future for healthy teeth, jaw and mouth comfort.
We are so happy this kid is tolerating this type of work that includes patience with getting these braces on and taking care of them (with some help!)
Despite this happy face he’s not too excited about this whole process but understands the point and trusts us ❤️

10/01/2025

I spy Charleston in this video! Pictured working in a mission and wearing a grey T shirt. His chaperone is also standing with him.
Thank you Space Camp and SCIVIS!

The U.S. Space and Rocket Center is hosting over 100 visually impaired students from 6 different countries this week.

09/05/2025

Charleston, Mike and I were invited to University of Michigan Medical School to share his story about batten disease, our family and clinical trials to a large group of 1st year med students.

It was a great experience for the three of us.

Charles (as usual) was cracking jokes and getting the crowd to love him.

One question we were asked was how we navigate siblings with a medically complex brother. To which the 🎤 mic’d up Charles replied (regarding his healthy brothers) “mostly they are just annoying”
that one got big laughs😆

Keep rocking it Charleston! We are so proud

06/01/2025

Having a blast at Great Wolf Lodge event with BSBP (bureau of services for blind people)
Charleston was able to participate in workplace and independent living readiness, we got to learn about ways to support him and of course we all got some fun water park time 💦 🛝 🏊

04/02/2025

Charleston had an opportunity to participate in Career Conversations with the MI Bureau of Services for Blind Persons (BSBP) today.
We had a full day learning about self advocacy, job readiness and civil rights. Grateful especially now to be living in a state with this service.
Keep on rocking buddy ❤️

10/23/2024

We love you space camp! Until next year
When asked if he was going next year Charles responded “well, I have to”

10/23/2024

On October 10th Charleston had his closing ceremony at Space Camp for Interested Visually Impaired Students (SCIVIS)
Our boy received an award out of 160 kids!

I have the YouTube video attached here. You need to move it forward to time of 1:19:50. (It was a long ceremony) 🤩😊

We are beyond grateful that he had the opportunity to participate in this. We are so proud of our boy.

Thank you to the Jackson County ISD who listened to his needs and stepped up in an amazing way to support Charles by sending a staff member! (We love you Kammy)

Thank you to the entire community at space camp and specifically Dan Oates who coordinates SCIVIS.

Thank you grandparents; my parents who went to Alabama to bring him home and then handed off to my in-laws.

Thank you to our entire community, church, friends, coworkers, and family who never gave up on us or Charleston.

And I know we would not be here without our favorite doctor.

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