Searching for a Future for Babies with Hunter Syndrome

What are parents’ hopes for their children?

Typically a happy, successful and long life.

Children are often asked what they want to be when they grow up… but the growing up part seems to be taken for granted.

For many children with Hunter syndrome, they’d give anything to be guaranteed that chance. That is what Project Alive is all about, kids who don’t get to hope to be a fire fighter or a doctor because they’re hoping that they get to be alive when their peers are entering high school. Check out Project Alive’s poignant video below:

 

Hunter syndrome is a lysosomal storage disorder, occurring almost exclusively in boys, that results in various types of damage to the body, resulting in physical and intellectual disability and eventually death.

The founder of Project Alive Melissa Hogan, ultimately describes receiving the diagnosis as her world falling apart, like the universe was stealing her baby from her, and she and the doctors were powerless to stop it. In an article in the Huffington Post she wrote,

“I’d wake up in the morning having forgotten that our life was inalterably changed. And then I’d remember the devastating news all over again.”

She’s learned to treasure every passing second with her son, knowing the time her family has with him is finite on a scale much smaller than most. She wrote the song below, expressing the weight of a Hunter Syndrome diagnosis.

The Project Alive campaign is centered around the appreciation of life and raising awareness, funds, and hope for the Savings Case & Friends foundation to find a cure for this heartbreaking syndrome. The foundation hopes that the elusive cure can be achieved through gene therapy and give these boys the priceless gift of a future.


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