Cade Jobsis, a brave 4-year-old from Alaska, is locked in a relentless fight against an ultra-rare neurodegenerative disease: spastic paraplegia type 50 (SPG50).

The Rare Disease and its Progression

At just 2.5 years old, Cade was diagnosed with SPG50—a disease affecting only about 100 children worldwide. SPG50 slowly robs kids of movement and brain function, leading to developmental delays, intellectual challenges, and eventually the heartbreaking loss of abilities like walking and talking.

Since his diagnosis, Cade has worked tirelessly in physical, occupational, and speech therapy. While these treatments help him hold on to his skills, they cannot stop the disease from progressing.

The Staggering Cost of Hope

There is a beacon of hope: a groundbreaking gene therapy created specifically for SPG50 could change Cade’s future by halting or reversing the degeneration.

However, the cost for hospital and regulatory approval is staggering: 1.15 million. Cade’s parents, Emma and Dylan, are racing against time to raise the funds, knowing that every dollar brings their son closer to a chance at life.

With the help of their community, the Jobsis family is sharing Cade’s story to raise both awareness and critical support. Donations can be made through GoFundMe or Cure for Cade.

Cade’s fight shines a light on the urgent need to fund treatments for rare diseases and the extraordinary love of families who refuse to give up hope.