Help the Butler Family-MS Treatment for Waylon

Hello friends,

There are so many people in this community who are fortunate to be friends with the Butler family, and so we are asking for you to donate to help provide Waylon with the medical treatment he needs.

You may be aware that six years ago, Waylon was diagnosed with primary progressive multiple sclerosis (PPMS), a very rare type of multiple sclerosis (MS). It was shocking news, especially after Danielle had fought her own battle with breast cancer only 5 years before. Things seemed fine for a while; it was diagnosed early and Waylon immediately began an aggressive course of treatment. But those who enjoy Waylon’s presence at all of the many community, school, sports, music and theater activities will have definitely noticed that he has undergone a rapid decline in mobility. You may have also heard that for the past several weeks, related symptoms have kept him either isolated at home or in the hospital.

At this point, the only course of treatment specifically approved for PPMS in the US does not seem to be working for him. Additionally, based on his diagnosis, there are no current clinical trials that he could qualify for in the US. Waylon and Danielle have been researching alternative treatments and located a groundbreaking stem cell treatment called HSCT that is currently available internationally, but it is not covered by American health insurance for PPMS patients. The cost of this month-long, intensive treatment and associated travel costs is approximately $75,000.

To make things more complicated, the Butlers’ home has become increasingly difficult for Waylon to navigate. As they anticipate the increased need for mobility assistance, they realize it will require some major renovations to become ADA-compliant. This work would include a bathroom renovation, their porch being renovated to accommodate a wheelchair lift, and a general overhaul in accessibility. They are currently getting cost estimates for undertaking these necessary projects. If we raise enough to cover the costs of the medical treatment, any additional funds raised will go towards the renovations they need to make to their home.

These are overwhelming, unattainable, life-changing financial challenges for a family of five that is also trying to plan for a future in which they may only have one income, and we are asking you to donate to support this family that means so much to all of us. We realize that meeting our fundraising goal will require an outpouring of generosity on a large scale. But please know that any and all contributions, whether big or small, matter a great deal.

We plan to provide regular updates on Waylon’s health and our fundraising progress, so please check back often.

With love & gratitude,

Team Butler

P.S. If your family has been positively impacted by the Butler family, whether by Declan, Maddie, Riley, Danielle or Waylon, we would be honored for you to share your story and this fundraiser via your social networks. We have seen the incredible power of the generosity of our community and hope that you will join us in supporting this family that we all love.