Anna Maria Island community rallies around family of 3-month-old baby battling rare disease
ANNA MARIA ISLAND, Fla. - At just over three months old, River has gone through more than some adults will ever experience. The baby boy was born with a rare disease that alters the immune system and causes white blood cells to attack blood cells in the body.
Mackenzie and Jonathan Anasis welcomed River into the world on March 30.
"He was super happy. Healthy," said Mackenzie.
READ: 'They saved my life': New court program in Manatee County aims to help those living on the streets
However, River started getting sick at two months old. His mom said he first came down with a 103-degree fever.
After going to doctors, River was admitted to Johns Hopkins All Children's Hospital. That's where his health continued to worsen.
"He ended up coming down with the Rhinovirus, Enterovirus, he ended up being sepsis and acute liver failure," said Mackenzie.
The baby's blood count levels were extremely low, and doctors knew something was seriously wrong. Two weeks into his hospital stay, doctors diagnosed River with a rare genetic immune deficiency disorder called hemophagocytic lymphohistiocytosis (HLH).
"One of the nurses came in and asked if we would like a priest to come in and talk to us," said Mackenzie. "That was really sad because at the time I didn’t really know what that meant."
Much like his name, though, River showed his strength. His days have been filled with hospital visits, blood draws and more medicines than prescribed to average adults.
As his parents rallied around him, the Island community of Anna Maria Island began a plan.
"They work very hard at the Waterfront, they’re part of the family there. I’ve been a patron there for a very long time. They’re always a light in our lives, and I think the community wanted to give back to them," said Karen Harllee, a family friend and organizer.
It started with the Center of Anna Maria Island and has expanded to island restaurants and businesses. Community members formed a benefit that will be held Saturday to support River and his family while he undergoes treatment.
READ: Pinellas County helping homeowners with critical repairs through state-funded program
"It’s something not a lot of people know about and there needs to be more research to support these families," said Harllee. "The more I’ve delved into it I realize there is not as much support out there as need be."
A bone marrow transplant is needed to help River produce healthy blood cells, which he’ll need to survive.
"He has two possible matches, they are only 9/10. We are hoping for 10/10," said Mackenzie.
Mackenzie and her family aren’t giving up hope and have the community’s support.
"I was amazed and shocked with the love and support that Karen has done for us, the whole island coming together. It’s truly amazing," she said.
Rise Up for River will be held Saturday, July 13, at The Center of Anna Maria Island from 3-7 p.m. at 407 Magnolia Avenue. There will be live music, food and a raffle.
River's family has started a GoFundMe as well for those who want to help support.
WATCH FOX 13 NEWS:
SIGN UP: Click here to sign up for the FOX 13 daily newsletter