Celebrating Anthony's Life
Anthony Maccarelli is not your typical 2-year-old boy.
His life is filled with needles, syringes and medications and has involved a number of surgeries.
No, it's not the typical life for a two-year old. The Scottdale boy is afflicted with Mitochondrial disease.
Mitochondrial disease affects the way the body breaks food into energy and affects every organ of the body. The disease primarily affects children and appears to cause the most damage to cells of the brain, heart, liver, skeletal muscle, kidney and the endocrine and respiratory systems. It is considered terminal, and a cure has yet to be found.
With all that is required for Anthony's care, help is needed. There are a number of medical needs that insurance doesn't cover.
Enter local musician Chris Higbee, who will headline the bill at “Anthony's Cure Jam” Nov. 16 at the Harrison City Fire Hall. Activities begin at 5 p.m. All proceeds from the benefit concert will go to Anthony's care.
Anthony's mother, Crystal Maccarelli, said she's known Higbee for years.
“We needed to do something because Anthony has a lot of medical things he needs to have taken care of,” she said. “We're a family of six, and my husband is the only one that works. I'm sole caretaker of Anthony and our other kids. I called Chris up and asked him if he'd be interested in helping us out, and he said, ‘Absolutely.' ”
For Higbee, there was no hesitation.
“I got to meet him and hang out and said, ‘Of course we'll do something,' ” Higbee said, adding that having a son of his own about Anthony's age brought extra meaning to him concerning this event. “When Crystal told me the situation, I wanted to dive into it.”
There is much involved with the “Cure Jam,” including a spaghetti dinner and music from other acts such as the Steve Smith Band and Bo Wagner singing the songs of Frank Sinatra, each of whom will participate on a volunteer basis. There will be raffles, a 50/50 drawing and a Chinese auction. The grand prize will be four tickets to the Steelers-Ravens game Nov. 18 and four tickets to tailgate party that night with Higbee. About 100 tickets were sold as of Nov. 5. A total of 500 were available for the event.
“We're going to be raising a lot of money for Anthony,” Higbee said. “It's for all ages. It's going to be a kid-friendly show. It's all about selling tickets. You're getting to help somebody in the community, that's the biggest thing in this whole thing. We want to get Anthony the things he needs. That's the point of this whole thing, to raise money and celebrate Anthony. This summer, we played 150 shows in front of 750,000 people. This is going to be the highlight of the year.”
Anthony was born April 28, 2010 with a heart condition called atrial and ventricular premature beats. Two days later he was transferred to Children's Hospital in Pittsburgh and spent a week in the facility. He was readmitted several times for the first few weeks of his life, His first surgery came in July 2010, which included muscle taken from his thigh for testing. He was diagnosed with the disease in August 2010.
Anthony's health issues are many including a heart condition, hypoglycemia, heat and cold intolerance, balance issues, weakness, fatigue and “bad muscle spasms.”
“They happen any time of the day and he takes medicine for it, but it doesn't take them away and they're very painful,” Crystal Maccarelli said. “They can happen anywhere in the body, from arms, legs, trunk and feet. There's some days he's just so fatigued and he can barely move. There's others when he looks like a normal, healthy little boy, but the following day plays such a toll on his body to where he can't move. He'll sleep pretty much all day the following day.”
Through all the pain, suffering and fatigue, Anthony has continued his love of life and owns an infectious smile that beams brightly. Not a tear is shed as his mother tests his blood by pricking a toe recently.
“He is very tough,” Maccarelli said. “He's been poked and prodded at since birth.”
Tickets for the event are available at anthonysfund.webs.com, by calling Crystal Maccarelli at 724-217-5731, at or by stopping at the Hildenbrand Design Center, 299 Third St., Irwin.
Donations can be made on the Anthony's fund website under the donations page.
Paul Paterra is a staff editor for Trib Total Media. He can be reached at 724-887-6101 or ppaterra @tribweb.com.