Bone Marrow Benefit for Joey Leone on Sunday at Bourbon Street

Joey Leone, of Tinley Park, was your typical 13-year-old.

He enjoyed playing football for the Frankfort Falcons and baseball for the Frankfort Square Baseball League.

He played trombone for the Summit Hill Junior High School concert and marching bands.

All of that changed dramatically over the Thanksgiving weekend last year. That’s when Joey was diagnosed with severe aplastic anemia, a bone marrow disease that affects his body’s ability to make the necessary red and white blood cells and platelets.

The rare disease affects just 3 in 1 million people.

Since December, Joey has been receiving regular treatments at Children’s Hospital in Milwaukee, which specializes in aplastic anemia cases. He has also either been hospitalized or in isolation.

“The only thing that will cure aplastic anemia is a bone marrow transplant,” said his mom, Shannon Gutierrez.

Siblings are usually a good source for compatible bone marrow, but Joey’s sister was ruled out. That’s when community groups began holding bone marrow screenings in hopes of finding a match.

“We found a perfect 10 match,” said Shannon. “It’s a one-in-a-million chance to find a non-related match.”

A transplant could happen as soon as June.

“We’re waiting to see how the drugs work on improving Joey’s blood count before scheduling the transplant,” Shannon said.

Shannon said Joey, an eighth-grader at Summit Hill School in Frankfort, has been a trooper throughout the ordeal.

“I never thought I’d hear him say this,” she said. “But the other day he told me he really, really misses going to school.”

“He intends to walk through graduation from Summit Hill with his friends on June 1,” Shannon said. “And he’s looking forward to attending Lincoln-Way North in the fall.”

Although in isolation, Joey has stayed in contact with friends and classmates.

“He plays Xbox online with his friends and stays in touch with them through Facebook,” Shannon said.

“We also allow one or two friends to visit at a time,” Shannon said. “We ask them if they are in good health and feeling OK, and make sure they wear masks and gloves when visiting.

“We have to be extremely careful. A sneeze could kill him,” she said.

Insurance has paid for most of Joey’s treatments.

“We have really good insurance through Joey’s biological father,” Shannon said. “But it doesn’t pay for everything.”

There’s also the cost of weekly trips to Milwaukee for treatments and the unfortunate fact that Shannon lost her job at the end of April and her family lost its home.

“I used up all of my family medical leave and my job was changing and would have required 90 percent of my time on the road, so it was a mutual decision to leave,” she said.

Her family has moved in with her parents, in Tinley Park’s Brookside Glen neighborhood. That has its own challenges for her family, as well.

“My dad is in critical condition and is in hospice care,” Shannon said.

To help her family with its expenses, a benefit is being held from 2 to 7 p.m. on Sunday, May 15, at 115 Bourbon Street, 3359 W. 115th St. in Merrionette Park.

Tickets are $30 for adults and $15 for children 6-16, which includes a buffet, open bar (beer, wine and pop), music by Five Guys Named Moe from 2-3:30 p.m., a DJ after that and a kid’s corner.

Gabrielle Lind said about 50 tickets have been sold in advance but lots of people have indicated they will be buying tickets at the door on Sunday. Call her for tickets at 815-498-6137.

Joey cannot attend but will be able to speak with friends, family and guests via Skype, and he has videotaped a special message that will be shown at the benefit.

There will be plenty of raffles and silent auctions on Sunday, said Angie Brooker, of Oak Lawn.

“We have 108 raffle baskets and another 100 silent auction items,” said Brooker, who grew up with Joey's mom Shannon in the Hometown-Oak Lawn area.