Dax’s Defenders

05/03/2025

We are in the mist of our first fundraiser for our new non profit, Derby for Dax! Get those donations in!

04/14/2025

It’s Derby time at Dax’s school!

Dax and his sister, Lennox, are each taking up donations that will go towards VWM research! Let me know if you would like to make a donation for part of their rose! There is a QR code for online donations. Just let me know you donated so I can track it for them!

We appreciate everyone’s continued support for VWM research!

03/20/2025

We had another visit at Cincinnati Children’s on Tuesday. Dax will be having a surgery called selective dorsal rhizotomy where they clip the nerves coming from his spinal cord that are causing the tightness in his hips and legs. They said it has a 100 percent success rate.

The neurosurgeon is going to talk to the orthopedic surgeon and see if and when he will do the tendon lengthening surgery to get his legs straightened back out. They’re hoping to do both surgeries at the same time due to anesthesia not being good for Dax, but they said it’s not something they typically do. It will be up to ortho.

They told me he will need very extensive PT after surgery, but we can handle that!

03/05/2025

Stable MRI for four years in a row now!

We see you, God! 🙌🙌

03/04/2025

Dax during some of his testing in Amsterdam this week. He did great!

03/03/2025

The amazing women working to save Dax in the Netherlands. Thank you will never be enough!

10/26/2024

Dax’s Defenders in the town of Man parade!

10/24/2024

SURPRISE!!

We have started a nonprofit organization in Dax’s name to help find a cure for vanishing white matter disease. Look for us in the town of Man parade this Friday!

Finding a Cure for Vanishing White Matter

10/23/2024

Dax’s Story!