Desirae diagnosed with fatal Niemann-Pick Disease

Hi, my name is Alison and I am helping to raise funds for my cousin and her sweet family. Her two-year-old beautiful little girl Desirae was diagnosed with this disease in October of 2022. Sweet Desirae has Niemann-Pick Disease type C.

NPC is an ultra-rare genetic, neurodegenerative, fatal disease for which there is no cure. It has the hand tremors of Parkinson's, the systematic decline of ALS, the memory loss of Alzheimer's, as well as random seizures and bursts of excruciating pain causing her to cry out (even in her sleep).

Desirae is receiving experimental treatments to try to help slow down the rapid progression of her debilitating disease. We do not know how much time she has left, but we are trying to remain hopeful.

But all the while, she remains our happy, loving girl ♥️ who brings so much joy into our lives!

We are grateful for this little WARRIOR!

Corinna, her mother, is unable to work at this time, and the medical bills, equipment, medications and therapies are adding up. Anything would be extremely helpful to this wonderful family!