niemann-pick disease, fulton, morrison, illinois, jeg,race for jeg

Community comes together to support boy fighting deadly disease

Fulton, Illinois-- Jeg Weets is a normal five-year-old. As he runs around with his friends you wouldn't know he is fighting a deadly disease.

In December of 2017, Jeg was diagnosed with Niemann-Pick Disease type C1, a rare genetic disease that leads to organ damage including brain damage.

"Eventually he'll lose the ability to walk, talk, hear and his memory is going to go," said his mother, Jenna Weets. The Weets travel to Chicago every other week for treatment but right now there is no cure.

"It is a fatal disorder and the average life expectancy is thirteen so we're just trying to give him a normal life, filled with love," said Weets.

On July 21, they made sure to fill Jeg's day with a communities worth of love at a benefit, "Race for Jeg".

"It's heartbreaking to watch your close friends go through this. We havea lot of hope for them but we want to be there for them every step of the way and this is just one of the ways we can help support them," said Dani Vance. Vance and her friend Jackie Damhoff helped plan the benefit.

Everything raised will help pay for Jeg's medical bills. Dozens of people showed up in support but the outreach goes beyond their own community.

"People from all over the country have reached out to them.  Morrison is an awesome community and they've pitched in to help us pull this off but it's been really neat with the outreach past Morrison and Whiteside County that this event has gotten," said Vance.

Morrison Police Chief Brian Melton presented Jeg with a quilt filled with patches from police departments all over the country and some even out of the country.  Each patch representing support for Jeg's battle.

"The support we've gotten it lifts our spirits and let's us know that we're not alone," said Weets.

They are still working on a final count from the benefit but believe they have raised over five thousand dollars.