'Jam' raises $6,200 for ill toddler
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The youngest of four children, 2-year-old Anthony Maccarelli gets a lot of attention from his three older siblings, partly because he is the baby of the family, but mostly because the Scottdale toddler has mitochondrial disease.
Mitochondrial disease causes damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. It causes myriad symptoms, including loss of motor control and gastrointestinal disorders. Currently, there is no cure.
On Friday, friends and family, including local musician Chris Higbee, gathered to raise about $6,200 at Anthony's Cure Jam in Harrison City Fire Hall. The evening featured a benefit concert, spaghetti dinner and raffle.
Costs associated with caring for a child with mitochondrial disease are taking their toll on the Maccarellis. Father, Vince, is a self-employed contractor. Anthony's mom, Crystal, isn't employed and home schools her other children, Vince, 7, Alyssa 5, and Isaiah, 4.
Mostly, the family is in need of a specially manufactured, $50,000 wheelchair-accessible vehicle that can fit the entire family, explains Crystal Maccarelli.
"All of the ones we've looked at are not for a family of six," she said.
And there are other medical needs that insurance doesn't cover. For example, to protect Anthony from extreme heat or cold, there are warming and cooling blankets, costing $2,000, that insurance does not consider a necessity. Anthony's therapy equipment is also changing as he grows, his mother said.
The disease has caused Anthony to spend virtually his entire first year of life in the hospital. Born in April 2010, he had a heart condition called atrial and ventricular premature beats. He was diagnosed with mitochondrial disease after hundreds of tests and procedures.
Now, he has trouble digesting his food properly and gets nutrition through a feeding tube. He also suffers from dystopia, or muscle spasms that don't go away.
"His belly doesn't empty the way it should and he won't eat by mouth because he knows if he does he'll get sick," Mrs. Maccarelli said.
On Thursday, Anthony came home from another weeklong hospital visit because of his digestive issues.
He also has trouble with balance and falls quite a bit, said his mother. Anthony is often exhausted, fatigued and has issues with pain.
"And he has a very contagious smile. We have come to the realization that Anthony needs to have a life. We have to let him be a kid," she said.
There is a play set, complete with slide, swing and protective mats, in the family's downstairs so Anthony can play without worry about outside temperatures. It's also an area for him to go when he has physical, occupational and speech therapy.
"We are very blessed by the support of a lot of friends and family who have pitched in." said Crystal Maccarelli.
Donations can be made at anthonysfund.webs.com or can be sent to 549 Creek Road, Scottdale 15683.
First Published November 21, 2012 5:15 am