Welcome, I am Jess Ryan and I am fundraising for a Miss Kalliope and her father Jeremy Benitez. Kalliope is losing her battle to Battens Disease, CLN5. a genetic disorder that is 100% fatal and robs the life of every child it affects. There is no cure. Kalliope has hourly- daily seizures which are becoming uncontrollable, Kalliope is blind and bed bound. Kalliope weighs less than 50 lbs , is 5 ft tall and is total care. She was not always this way !

Kalliope was a hyper firecracker that loved swimming, running , playing dress up, singing and annoying her dad with her cuteness. There wasn't anything Kalliope couldn't do ! She feared nothing!!! Around Kindergarten her speech and handwriting started to change and deteriorate. Then the seizures started.. after 2-3 years of fighting with different doctors her dad got the devastating news that Kalliope has a fatal genetic disease. Being told your child will eventually die while still alive is something no parent should have to endure.

As of 3/31/23 Kalliope has been placed on Hospice. Dad has a funeral home in mind but can't set anything in stone without full payment. I am asking for any financial assistance for medical bills and funeral payments that may help this Father during these hard times. We don't know how much time we has left with Kalliope but we know it’s limited.

Thank you for taking the time to read Kalliope’s story and helping whether it be prayers or financial.