Archer's Fight Against VWMD

On October 17, 2023 we learned that our son, Archer, has a very rare genetic disease called Vanishing White Matter Disease (VWMD). It's a type of Leukodystrophy, which is a group of genetic conditions that cause the white matter of the brain to deteriorate. The deterioration of white matter in the brain leads to the loss of walking, motor function, swallowing, the ability to sit unassisted, speech, seizures, comas, and eventually death. VWMD is both a progressive and episodic disease. It will naturally progress over time and it can also progress rapidly because of neurological stresses like fevers and minor head trauma.

Scientists and doctors are working hard on finding treatments for VWMD. We have the opportunity to participate in an experimental trial in Amsterdam, which is for a medicine doctors believe might stabilize Archer. These doctors are hopeful that in 3-5 years, there will be safe and effective treatments to halt the progression of VWMD.

Due to the nature of VWMD, any treatment would at best, halt the progression of the disease. They do not believe that it's possible for Archer to regain any skills that he loses due to the disease progression.

That means that Archer will have a lot of challenges to overcome in this life. Our family is going to incur enormous costs that aren't all covered by insurance. It's going to mean making our house and vehicles accessible to him. For example, just remodeling our 80 year old home’s bathroom to make it accessible for Archer will be $33,000. We have to be able to get his Zippy in there!

Archer calls his walker Zippy because it helps him "Go fast!"

It's going to mean paying for weekly therapies and specialized equipment to do the simple tasks that you and I take for granted every day. There will also be (and has already been) long doctor visits, flights, hotels, food, and rental cars.

Please help Archer's Fight Against VWMD by donating whatever you can to help. Your gift of any amount will make an incredible impact on his quality of life. Please share this as far and wide as you can.

We also invite you to follow Archer's journey on Facebook .