1888PressRelease - Palm Harbor, FL Father of four needs donations for medical help in Chicago, IL.
Tampa-St. Petersburg-Clearwater, FL - To look at Joe Arcese, you would never know he was seriously ill, stricken with a disease so rare it's often misdiagnosed. Until you hear him talk, his strong New York accent fading after several minutes into a hoarse croak and then a whisper, his vocal chords seizing momentarily.
Until you see his hands folded in his lap, limp, like wet clay waiting to be sculpted. They fumble with even the smallest objects, unable to grasp a cell phone. You can't imagine those hands holding a baby, and they haven't, not since his fourth child was born late last year.
Arcese, 38, needs help, and it's not easy for him to ask. A 20-year veteran of the auto industry, he's used to making the deals and helping others realize a dream. But now his life depends on the generosity of friends and strangers.
Arcese has chronic inflammatory demyelinating polyneuropathy, or CIDP, an acquired immune-mediated inflammatory disorder of the peripheral nervous system. He first noticed symptoms 14 years ago. In the last six months, however, the disease has ravaged his body. He has lost the ability to lift anything heavier than one pound. He requires assistance to walk, his balance untrustworthy. Breathing feels like he's trying to lift a car off his chest.
Arcese has hope, though. He and his wife, Nicole, located a clinical study in Chicago, IL that will replace his stem cells and reboot his entire immune system. The study is his last, best chance to beat this disease. If not, he likely will spend the rest of his life in a wheelchair.
The study isn't cheap. Without insurance, participants must pay up to $125,000. The couple have four children, three of them toddlers, aged 5, 2 and 5 months. They will need to spend several months traveling back and forth out of state. Arcese hasn't worked as Sales Manager at Courtesy Palm Harbor Honda since March. Their savings is depleted.
Arcese and his family need at least $50,000 - possibly more. His insurance will pay 60% of the cost of the study, if he is accepted. The couple won't know until early June exactly how much they need for medical and cost of living expenses.
"I know from everything I've read, this could be a cure. But I know until I get there and get accepted and money is provided, it isn't real," he said, struggling not to find the words, but just to speak them. "I have my faith in God."
His church, Gulf Coast Community Church, has accepted donations on Arcese's behalf to help pay his family's bills. Family and friends also created an online fundraising campaign, Go Fund Me website search "Joe Arcese", and they have been updating the page while Arcese and his wife traveled to Chicago for a medical evaluation. To date, the web page has been shared more than 1,000 times. Donations have come in, but the money raised so far is not enough to pay for Arcese's portion of the medical costs.
His family expects to learn this week by June 11 whether he has been accepted into treatment. At that point, they must show the ability to pay his share of the cost or Arcese won't be able to return to Chicago for the stem cell transplant.