June 10, 2015 mcfadyena

#WhenIGrowUp I want to be…

Project Alive began from one photo.
One teacher.
A kindergarten teacher in Spring Hill, Tennessee, sent home photos with her children at the end of the school year. But little did she know that her fun project would emerge into Project Alive.
When I grow up. fireman
One such photo was of a boy, Case Hogan, who suffers from Hunter Syndrome. It said that he wanted to be a fireman.
Indeed he did.
His mom had taken him to the local fire station on several occasions to check out the trucks, high five the firefighters, and try on the gear. It was hard to get him to leave.
But even knowing that he wanted to be a fireman didn’t change the gut wrenching feeling when his mom saw that photo.
She couldn’t even breathe.
The idea that a boy with Hunter Syndrome could dream to be a fireman flew in the face of everything she knew to be true about the future of the disease. He was not expected to live past his teens.
She saw the photo and immediately realized that what she wanted more than anything, and what he wanted, in order to fulfill his dream of being a fireman, was to be ALIVE.
Please watch this video and share. All donations will go to gene therapy research, our closest hope for a cure.
You can view the full website here: http://projectalive.org/


We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!