FOX5 Vegas - KVVUFireworks booth open in memory of child

One local family's fireworks booth is in memory of their baby who died in 2009 from a rare disease called Myotubular Myopathy.

Chrissie Coon-Sanders is the Public Information Officer for the North Las Vegas Police Department. She and her husband Sergeant John Sanders are running the booth at 215 & North Decatur.

Officer Coon said she had a normal pregnancy, but when Joey was born something wasn't right. It took doctors about a year to diagnose him with Myotubular Myopathy.

It's a rare disease that the family didn't know much about.

They said at one point they thought Joey would make it, and he was doing things his doctors never said he would. But in 2009 he passed away.

We took him to the hospital on a Friday, and he passed away Saturday night," Coon remembers. "For a couple days we didn't know what happened or how it happened, but we found out he had a massive liver hemorrhage."

Coon said because the disease is so rare, they didn't have many to turn to. Now they are very much involved with the Myotubular Myopathy Resource Group, and have met hundreds of families around the world who are also affected.

Officer Coon & Sgt. Sanders hope to raise $5,000 from their fireworks booth. It will go to their non-profit cause. They say the fireworks booth is helping turn their negative energy, about the tragic loss of their young son, into something positive, that can help others.

If you'd like to learn more about their cause, click here.