Help Justin & Michelle Save Grayson

Help Give Our Grandson Grayson a Chance at Life

Fundraising Goal: $2.5 Million

We’re Phil and Diana Linxwiler—Grayson’s grandparents—and we’ve created this fundraiser on behalf of our sweet grandson and his devoted parents, Justin and Michelle.

Grayson was diagnosed at just five days old with Spinal Muscular Atrophy Type I (SMA Type I)—the most severe and life-threatening form of this rare genetic disease. It’s a condition that weakens the muscles needed to move, swallow, and even breathe. Without treatment, most babies with this diagnosis do not live past their second birthday.

As grandparents, it's hard to put into words the pain of watching your child receive such devastating news about their child. And yet, through the fear and heartache, we’ve also seen immense love, strength, and determination from both Grayson and his parents. They are doing everything in their power to fight for his future—and we are doing everything in ours to support them.

Why We’re Asking for Your Help

Grayson urgently needs access to two critical therapies:

Zolgensma, a one-time gene therapy that costs $2.2 million, is designed to replace the missing gene responsible for SMA and stop further muscle deterioration.

Evrysdi, a daily medication that helps slow the disease’s progression, costs over $13,000/bottle, exceeding $115,000 per year—and that amount will only grow as Grayson does.

On top of these life-saving treatments, Grayson will require continuous medical care, hospital visits, therapy, specialized equipment, and other support services for years to come.

Unfortunately, insurance has denied coverage for both Zolgensma and Evrysdi. Justin and Michelle are pursuing appeals and looking into Medicaid and other options. We remain hopeful that some coverage will come through—but the financial burden remains enormous no matter what.

Where Your Donation Goes

We are working to raise $2.5 million to help ensure Grayson receives the care he needs. Your support will help cover:

• Gene therapy (Zolgensma) if insurance or Medicaid does not cover it

• Daily treatment (Evrysdi) to slow the progression of SMA

• Ongoing medical care, including specialists, hospital stays, and lab testing

• Therapy and early interventions to build strength and motor function

• Medical and adaptive equipment to support his breathing, feeding, and mobility

• Out-of-pocket expenses and uncovered care needed throughout his journey

Regardless of how Zolgensma is funded, your donation will directly support Grayson’s long-term health and quality of life.

A Grandparent’s Plea

Grayson is a beautiful, bright little boy with so much life ahead of him—if he gets the chance. As grandparents, we’d give anything to ease his path. Since we can’t change his diagnosis, we’re doing what we can to rally support.

Please consider donating. Share this message. Say a prayer. Every gesture of support brings hope to our family.

With deepest thanks,

Phil & Diana Linxwiler

Grayson’s Grandparents

To learn more about Spinal Muscular Atrophy (SMA), visit CureSMA.org