Jett’s Journey………….

Our family is asking for help for a very special little boy—our grandson, Jett—who is just a couple of months shy of his 5th birthday.

Until recently, Jett was a happy, high-energy kid who loved riding his motorcycles, playing with his little brother Reed (2½), and couldn’t wait to meet his brand new baby sister Coen, who arrived just two weeks ago. He’s always been full of life, laughter, and curiosity.

On April 15, his world changed overnight.

Jett was diagnosed with Metachromatic Leukodystrophy (MLD), a rare and devastating degenerative genetic disease that affects fewer than 300 children in the United States.

Like any family would be, we were overwhelmed with shock and heartbreak—but only for a moment. Because now, we are focused on one thing: doing everything possible to help Jett.

Jett’s parents, Danielle and Nick, have taken him to UCSF Benioff Children’s Hospital in San Francisco, where he is being evaluated for the clinical trial that may offer hope. The FDA trials (LENMELDY) show promise to slow/stop the progression.

 This is where his treatment journey will take place.

Nick is a firefighter—someone who shows up every day to protect and save others. Now, his family needs that same kind of support from all of us.

The reality is, even with access to a clinical trial, the financial burden is enormous. While insurance may help with portions of medical care, it will not cover the frequent travel between Santa Clarita and San Francisco, extended stays, time away from work, or the everyday needs of a family with three young children navigating an unimaginable situation.

We are raising funds to help cover:

• Travel and transportation between Southern California and San Francisco

• Temporary housing during treatment

• Lost income while caring for Jett

• Daily living expenses for the family

• Any additional medical-related costs not covered by insurance

Most importantly, we want Danielle and Nick to be able to focus on what matters most—being present with Jett and their children—without the constant weight of financial stress.

If you are able to give, no matter the amount, it will make a difference. And if you can’t donate, sharing this page means just as much.

Thank you for standing with Jett and our family. We are holding onto hope, and we are incredibly grateful for your support. #jettsjourney

— With love and gratitude Jett’s Grandparents

Kathleen & Dale, Janet, Dawn & John