Wethersfield community steps up to help teen battling rare disea - WFSB 3 Connecticut

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Wethersfield community steps up to help teen battling rare disease

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Connecticut Children’s Medical Center determined Charlie had a life-threatening immunodeficiency known as Hemophagocytic Lymphohistiocytosis, also known as HLH. (GoFundMe) Connecticut Children’s Medical Center determined Charlie had a life-threatening immunodeficiency known as Hemophagocytic Lymphohistiocytosis, also known as HLH. (GoFundMe)
WETHERSFIELD, CT (WFSB) -

A Wethersfield mom knew something wasn’t right when her teenage son came down with a fever.

"All of a sudden he gets a fever, you just think it's just a virus that will go away,” said Melissa Hayes, of Wethersfield.

A mother’s instinct kicked in quickly, and she thought something was seriously wrong with her 13-year-old son Charlie, and she was right.

"You go from thinking it’s just a fever to your son fighting for his life...and in a heartbeat your whole world changes,” she said.

After undergoing a series of tests, Dr. Kerry Moss of Connecticut Children’s Medical Center determined Charlie had a life-threatening immunodeficiency known as Hemophagocytic Lymphohistiocytosis, also known as HLH.

“It's a rather rare disease and it’s an over activation of the immune system,” Moss said.

The diagnosis was devastating to Charlie’s parents.

"HLH...what is HLH...I couldn't even pronounce it...but this is what is ravaging in my son's body,” Melissa Hayes said.

“I'm like how is my 13-year-old boy going in intensive care when he was healthy two days ago,” said Charlie’s father Steven Hayes.

Helping lift their spirits during this difficult time has been the Wethersfield community and beyond.

From countless texts and phone calls, to t-shirts and balloons, even a basketball from UConn Men’s Basketball Coach Kevin Ollie, the support has been overwhelming to the close-knit family.

"A lot of people...it's just really great for the support and all that,” Charlie said.

Charlie is now undergoing a combination of chemotherapy and steroids to help reset his immune system.

While each patient with HLH has a different prognosis, Moss is expecting Charlie to make a full recovery. For that, his entire family is eternally grateful.

"She saved my life pretty much. I think if it weren't for her I wouldn't be here today,” Charlie said.

Moss said she is grateful Charlie’s mom trusted her gut.

"I always say in medicine it's 51 percent love and parents and 49 percent medicine that does well in children, and that's exceedingly true in this case,” Moss said.

After two weeks in the hospital, Charlie came home on Monday and has already made so much progress.

Now the goal is to get back to school, back to playing sports, and back to being a child again.

To make a donation to the family, a GoFundMe has been set up to help with medical costs and can be found here.

To see more photos, click here.

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