Support Nyomi's Battle Against Krabbe Disease

On August 19, 2024, our sweet daughter, Nyomi, was diagnosed with Infantile Krabbe Disease (Globoid Cell Leukodystrophy), a rare and devastating genetic disorder. Krabbe Disease affects the nervous system, leading to severe neurological decline. It gradually destroys the protective coating of nerve cells, leading to progressive muscle weakness, vision and hearing loss, and ultimately, a shortened lifespan. Only 1 in 100,000 children inherit this heartbreaking disease and there is currently no cure for it.

Needless to say, our family is absolutely devastated. In just a short time, Krabbe disease has progressed rapidly in Nyomi, leaving her unable to walk, hold objects, or perform basic tasks.

Currently, she is unable to sit up without the aid of pillows to prop her up. Watching her struggle daily is unbearable, yet through it all, Nyomi continues to bless us with her beautiful smile and playful spirit. Her cheerful, silly side still shines through, reminding us of the joy she brings to our lives. She loves ducks, dogs, music, dancing and so much more. She loves our family and we love her.

Nyomi is a potential candidate for a Stem Cell Transplant, the only treatment that may slow the progression of this cruel disease. Without it, we know the outcome is grim. The costs associated with her care, including medical expenses, specialized equipment, in-home therapies, and the loss of income as we devote our time to her, are overwhelming.

We are reaching out to our community, our friends, and our family for help. Your support will not only provide Nyomi with the best possible care and comfort but also give her a fighting chance against this disease. The need for funding is crucial, and every contribution, no matter how small, will certainly make a difference.

Please help us give Nyomi the life she deserves.

Thank you for your kindness and generosity.