Help Find a Cure for Dean

Hello, Dean is my 9-year-old grandson. He is a great kid with a big heart. Dean loves baseball, his dog Bingo and his little sister. Dean also loves airplanes and dreams of growing up to be a Captain in the U.S. Air Force!

Sadly, Dean was diagnosed with Beta-mannosidosis, an ultra-rare disease with a devastating outcome and there is no treatment. This disease is causing toxic material buildup in his brain and spreading throughout his body. It will eventually cause: Blindness, seizures, deafness, mental deficiencies, skeletal deformation, and reduced life expectancy. My sweet Dean has already developed hearing loss, vision impairment and mental delay. This disease is so rare, there are only 4 children diagnosed in the U.S.

With all he has to endure, Dean is a brave boy, smiling every day and working through his disabilities. Fortunately, we have new hope because the Kimonis Lab at UC Irvine is developing a replacement enzyme. However, funding is desperately needed to conduct clinical trials to test the safety of this potentially life-saving treatment.

Although family and friends have donated, this being a grass roots effort, it will take years to raise the funds to save these precious children's lives. I am resolved to do everything I can to find a cure before it's too late for Dean. I am hoping with your kindness and collective help, we can raise the funds to find a cure so that no parent or grandparent will ever have to see their child suffer without any hope.

All collected funds will be forwarded to the Lost Enzyme Project and will be used to conduct the clinical trials.

Thank you so much for taking the time to read Dean's story,

Lorena