Teens Lend Their Helping Hands to Fight Thalassemia
July 29, 2014 – Two amazing teen-age girls who until recently had never heard of Cooley’s anemia are now among our greatest allies in the fight against thalassemia.
Amanda, Lisa, AJ, Joe, Nairobi
Amanda Rodriguez, 15, and Nairobi Mendez, 18, are friends who were living in Lodi, NJ. This spring, one of Amanda’s friends re-tweeted a post from Lisa Vigliotti about the Care Walk she and her husband Joe were organizing for their son, AJ, who has thalassemia.
“It touched my heart to see parents fighting so hard to inform people about thalassemia and raise money for their son’s disorder,” says Amanda. “I asked my friend, Nairobi, to attend the Walk for AJ with me. That night, I emailed Lisa and I asked her all about AJ’s disorder and Nairobi and I planned a bake sale in Lodi High School for AJ. The bake sale made just under $300.”
“AJ’s heartbreaking story captivated us,” says Nairobi. “The $300 from the Bake Sale didn’t feel like enough. I was a volunteer for several years with the Boys & Girls Club of Lodi and had experience with fundraisers so that’s when the idea of AJ’s Helping Hands Dinner came about.” In addition to the dinner, the evening included “tricky trays,” baskets of raffle prizes that participants could win.
AJ
“Just by looking at AJ’s face and knowing in your heart that this precious baby has a blood disorder like this, there was no way we could turn away,” comments Amanda. “We knew we had to help AJ in any way we could. He holds a special place in our hearts.”
“AJ’s Helping Hands Dinner took place at the Boys & Girls Club of Lodi on May 18,” explains Nairobi. “It took A LOT of work to plan it. We met with Lisa & Joe countless times to go over the progress that we had been making. We got several local restaurants to donate almost all of the food; other local business made donations for our tricky trays and soon the event was starting to plan itself. We tried our best to incorporate a little piece of AJ in everything at our event while still keeping it tasteful enough for our adult guests.”
The day before the Dinner, Amanda and Nairobi joined AJ’s father Joe collecting money for CAF at a local ShopRite store. Amanda estimates that about $2,000 was raised that night, and more than $3,000 from the Helping Hands Dinner. About 125 people attended the dinner, which was also supported by the Knights of Columbus.
Nairobi with AJ
Neither Nairobi nor Amanda knew about thalassemia before reading Lisa’s tweet. “We got involved to show AJ and other people with this disease that they aren’t alone,” says Amanda. “There are people out there who care, and want to make a difference. It was such a blast getting to know the Vigliotti family and planning this event.”
“Knowing that Amanda & I were able to pull this event off and help AJ meant the world to me,” adds Nairobi. “There is no way you can interact with him without falling completely in love. And right off the bat Lisa, Joe, and their amazing family had become family for me too.”
“Amanda and Nairobi touched our lives,” says Joe Vigliotti, “and we have made two new families of friends and have a new sense of community out of these two students who decided not to sit on the sidelines, but to take action when they saw a problem and then took concrete steps to do what they could do to solve it.”
Nairobi, who is just beginning her studies to eventually become a neonatal Nurse Practitioner, and Amanda, who hopes to pursue a career in veterinary medicine, thank everyone who helped them with these events, especially Lisa and Joe. In addition, Amanda mentions the great help provided by her parents, Linda and Bruno Rodriguez, and her brother Alex.
Amanda with AJ
The two friends made a big contribution to the thalassemia community, but they got a lot out of the experience as well.
“I look up to AJ for being so strong in his fight against thalassemia and I’m glad I got to meet him,” Nairobi states. “He’s an inspiration to all and I hope one day my own children are as great as he is!”
“We have become so close to the Vigliottis,” adds Amanda. “Creating and organizing this event changed my life for the better. I realized how much I could help out by just trying. I hope this inspires others to want to make a difference in the world.”
