Our daughter Skylar has been defying the odds since the day she was born. She arrived prematurely, spent her first month in the NICU, and joined our family at just one month old. After a long and emotional journey, we officially adopted her at 2.5 years old.

Skylar is resilient, brave, and full of light—but her fight is far from over.

Just before her first birthday, she was diagnosed with Beta-Mannosidosis, an ultra-rare, progressive, and life-threatening lysosomal storage disorder with no approved treatment. It has caused vision and hearing loss, neuropathy, feeding challenges, and countless setbacks—yet she continues to fight with remarkable strength.

In hopes of slowing the disease, Skylar underwent a bone marrow transplant. Throughout this process, she faced months of life-threatening complications and spent over nine months in the hospital, including extended stays in the ICU. Despite this, she continues to show signs of disease progression.

Yet there is hope.

A targeted enzyme replacement therapy developed at UC Irvine has the potential to stop the progression of Beta-Mannosidosis. With incredible support, families like ours have already raised the funds needed for the preclinical studies, over $521,000!

Now we must move on to the next critical steps:

-Natural History Study – Required for FDA approval: $75,000

-Drug Manufacturing – Estimated cost: at least $3 million

-Clinical Trials – The final step to bring treatment to patients, this could cost families over 10 million dollars.

To drive this work, we co-founded The Lost Enzyme Project, dedicated to accelerating research and giving children with Beta-Mannosidosis a fighting chance. For more information, visit TLEP.org

Please consider donating, sharing this page, or helping us spread Skylar’s story. Every contribution brings us closer to a life-saving treatment—for Skylar and for children around the world facing this devastating diagnosis.

Skylar’s sign name means “brave” because she is stronger than life is hard, and we will never stop fighting for her.

With love and gratitude,

Nate & Erin Hubbard

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