Our daughter Skylar has been defying the odds since the day she was born. She came into the world prematurely and was placed in foster care, joining our family at just one month old. After a long and emotional journey, we were finally able to adopt her at 2.5 years old.
Skylar is full of resilience and spirit—but her fight is far from over.
Just before her first birthday, Skylar was diagnosed with Beta-mannosidosis—an ultra-rare, progressive, and life-threatening metabolic disorder that slowly takes away a child’s physical and cognitive abilities. There is currently no treatment.
She is currently undergoing a bone marrow transplant at Primary Children’s Hospital. While this may temporarily slow the disease, it is not a cure.
But there is hope. A promising enzyme replacement therapy being developed at UC Irvine could stop the progression of Beta-Mannosidosis entirely. The challenge? Because this condition is so rare, families like ours must raise the $521,000 needed to move the treatment forward—by August 1st, 2025.
To help make this possible, we co-founded a nonprofit called The Lost Enzyme Project, dedicated to funding this critical therapy and giving children like Skylar a fighting chance. The Lost Enzyme Project
Skylar’s condition continues to worsen. She’s already lost vision and hearing, struggles with painful neuropathy, behavioral symptoms, and now depends on IV nutrition. Still, she fights. Her sign name means “brave”, because she is stronger than life is hard.
Now, we need your help.
Please consider donating, sharing her story, and helping us reach our goal. Every contribution brings us closer to a cure—and to the future Skylar deserves.
With love and gratitude,
Nate and Erin Hubbard
#betamannosidosis
#thesekidscantwait
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#savingsky
#future4sky
#thelostenzymeproject
