Creation of 'Hayden's Heroes' Inspired by 6-Year-Old With Rare Disease
Updated: Tuesday, November 19 2013, 11:27 PM EST
Every parent knows how heartbreaking it is when your child is sick, but it's even worse when you don't know whats wrong.
In many ways, Hayden Boerum is like any other six-year-old boy, curious about everything.
But the truth is, very little is normal in Hayden's world. By just looking at him, you can tell he's been through more than any child should.
Hayden's mom, Melissa Golden, say the problems started when he was two-and-half years old.
"I knew something was wrong," said Golden. "He just wasn't himself. I think as a parent, you know your child."
Even the doctors didn't know what was wrong, but after months of searching Dr. Jay Greenberg finally found an answer.
Hayden was diagnosed with Hemophagocytic Lymphohistiocytosis and chances are you have probably never heard of it.
At this time there are only about 10 to 20 cases of the disease in the world. It is a rarity that meant a helpless, lonely reality for Hayden's mom.
"It was horrible. Probably one of the worst feelings ever when your kid is really, really sick and laying in the PICU and yellow because his liver's not working," said Golden.
With no know treatment, Hayden had just days to live. His only hope was an experimental drug that had worked in adults, but has never been attempted in a child.
"We were desperate to try that treatment on Hayden, and it worked," said Greenberg.
Unsure of how long the treatment would last, Hayden's parents decided to choose another path, opting for a double umbilical cord transplant to try and trade Hayden's bad immune system for a good one.
It has now been one year since Hayden's transplant and he is still fighting the complications. Hayden still returns to Children's Hospital in DC at least two times a week, and sometimes for weeks at a time.
Hayden's journey has inspired Golden to take up the fight for other kids with similar disorders. 'Hayden's Heroes' raises awareness and money to donate to other families in similar situations.
The disease that Hayden has, also known as HLH, falls under the category of Histiocytic Disorders, which are rare. Hayden's is the rarest among them with very little research or funding in this area.
To check out the 'Hayden's Heroes' Facebook page click here.