Grayson Gilbert Linxwiler

Help Give Grayson a Chance at Life

Fundraising Goal: $2.5 Million

Our sweet baby boy, Grayson, was diagnosed at just five days old with Spinal Muscular Atrophy Type I (SMA Type I) — a rare and devastating genetic condition that affects the muscles needed to move, swallow, and breathe. It is the most severe and life-threatening form of SMA.

We were still settling into our new life as a family of four when we received the diagnosis that no parent is ever prepared to hear. Without treatment and proper care, babies with SMA Type I do not survive beyond their second birthday.

But there is hope — and we are doing everything we can to give Grayson the best chance possible.

Our Journey — and Why We Need Help

Grayson needs Zolgensma, a $2,200,000 one-time gene therapy that aims to restore the gene needed to prevent progressive muscle loss. At the same time, he also needs access to Evrysdi, a daily treatment that helps slow the disease’s progression. A bottle of this medication costs $13,000. These therapies, along with ongoing medical care, physical and occupational therapy, hospital visits, lab work, and specialized medical equipment, will all be essential in helping Grayson live the fullest life he can.

Unfortunately, our insurance has denied coverage for both Zolgensma and Evrysdi. We’re in the process of appealing and exploring other routes — including Medicaid — and we remain hopeful that Zolgensma may still be covered.

But regardless of the outcome, the road ahead includes significant and ongoing expenses to support Grayson’s health, comfort, and development.

How Your Donation Will Help

We are humbly asking for your support in raising $2.5 million to help cover the extensive costs associated with Grayson’s care. Your donation will go toward:

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 Message from Our Hearts

Grayson is strong, sweet, and so loved. He’s already shown us how much fight he has in him, and we are determined to give him every opportunity to grow, thrive, and experience the joys of childhood.

We can’t do this alone. Every donation — no matter the size — brings us one step closer to giving Grayson the future he deserves. Even if you’re not able to give, sharing his story means the world to us.

Thank you for standing with us in this fight.

With deep gratitude,

Justin & Michelle – Grayson’s Parents