Grayslake family plans fundraiser to fight disease
Javon Ayers has started the eighth grade at Woodland Middle School in Gurnee, but he's unsure how many days he will be able to attend classes.
“Last year he missed over 70 days of school,” his mom, Shakara Gross, said.
And the 14-year-old Javon would love to be able to join sports like other boys. But he can't.
“I'm not in any activities, but I want to be,” he said.
Javon lives with sickle cell anemia, a blood disorder that causes debilitating pain, sometimes without warning. Gross said Javon does not know anything different because he's lived with the disease his entire life.
“Sometimes, I don't know how he handles it,” she said.
To bring awareness to his condition, and to raise money for the hospital that has cared for Javon, the Grayslake mom is organizing a fundraiser, Javon's Motorcycle Ride for A Cure, which will be Saturday, Sept. 12.
It was through blood testing at birth that Javon was diagnosed. Sickle cell anemia, Gross explained, means his red blood cells are shaped like crescent moons, so they do not flow properly through the veins and get stuck. This can cause intense pain anywhere in the body.
“Most of the pain is in my lower back. That's where it hurts most,” Javon said. “If it gets really bad, we go to the ER, and that's when I get nervous because I'm not a big fan of needles or shots. I do sometimes get scared.”
When the pain cannot be managed at home, Javon receives treatment at the University of Illinois at Chicago Sickle Research Center. Within the past three years, he also has received blood transfusions at the recommendation of his doctor, Gross said. The new blood may help his normal red blood cells to reproduce new ones, she said.
“The nurses take really good care of me,” Javon said.
Gross added, “The whole fifth floor knows Javon.”
She acknowledged they focus on taking each day one day at a time.
“We hope when he wakes up each morning he will be well enough to go to school and have a great day and start over the next day,” she said.
The idea to organize a fundraiser came from Javon's grandparents, Onesta and Jim Norman, who wanted to help their grandson and the hospital that has treated him all his life. As avid motorcycle riders who have joined rides for various charitable causes, Gross's mother, Onesta, suggested organizing a ride.
Registration for Javon's Motorcycle Ride for A Cure begins at 9 a.m. at KC's Cabin, 309 Route 173, Spring Grove, where breakfast will be served. Gross said participating bikers will travel into Wisconsin and conclude the ride back at KC's Cabin.
After the ride, there will be dinner, live music and a raffle. A representative from Be The Match also will be on hand to help people join the bone marrow registry. A bone-marrow transplant, Gross said, is one way sickle cell anemia can be treated, but it has not been considered in Javon's case.
“Unfortunately, in the Hispanic and African-American communities, we are the lowest on the registry when it comes to finding a match,” she said. “There are so many people out there who could be cured right now, but there's not enough people in the registry right now to be a match.”
A $20 donation is requested for drivers and $10 for passengers. Proceeds will go to UIC Health: Sickle Cell Research Center. Gross said it's been a blessing that even when her insurance benefits had stopped, the hospital continued to treat him.
“They have lost a lot of money due to the Illinois budget cuts, so we want to definitely help them out,” she said.
In addition to registering at the event, registration can be done in advance by visiting www.eventbrite.com; search for Javon's Motorcycle Ride For A Cure.