This is Jarod and Caleb. Jarod is sixteen and Caleb is eleven years old. They love to do things like most boys their age...playing sports, riding bikes, swimming and having fun with their family. But their bodies harbor a deadly secret.
Jarod and Caleb were diagnosed in 2011 with MPS III, also called Sanfilippo Syndrome. Sanfilippo Syndrome is a very rare genetic disease. Although it explains all of the challenges and delays Jarod has struggled with through his life (Caleb isn't exhibiting as many symptoms yet), it also means that their futures are grim. Children with Sanfilippo Syndrome typically don't live beyond their teen years. These boys will slowly lose their ability to speak, walk, eat, survive.
There is no cure for Sanfilippo Syndrome. And there are currently no viable treatments.
We have a chance to fight this fate. We need to raise awareness of the disease and promote research into possible treatments. Ultimately we need to find a cure! In 2014, The Sanfilippo Hope Initiative was created to do exactly that. With your help and donations, The Sanfilippo Hope Initiative, dba Team Jarod/Team Caleb, hopes to offer assistance to families of individuals with Sanfilippo Syndrome, raise awareness of this ultra-rare disease, and join together with other grassroots organizations to fund much needed research to find a cure. We hope to spare children diagnosed with this horrible disease the lifetime of pain and suffering that they currently face.
Will you help us? Will you join our team to save Jarod and Caleb?