puts efforts behind
helping 14-month-old
Stampers will raise funds
for baby’s medical needs
Freehold woman
puts efforts behind
helping 14-month-old
By sandi carpello
Staff Writer
At 14 months, Steven Gerard Pepi has never sat up in his crib, has yet to breathe without the aid of a respirator, and may never be able to swallow food. Born July 25, 2001, Steven Pepi entered the world with neither a cry nor a breath.
Diagnosed with an undetermined form of congenital muscular dystrophy, Steven is confined to a wheelchair so that he can be kept upright, and needs round-the-clock care, said his parents, Michelle and Steven Pepi of Helmetta, Middlesex County, who also have a healthy daughter, Nicole, 7.
Affecting one in 10,000 newborn babies, congenital muscular dystrophy is evident at birth, characterized by abnormally decreased muscle tension and generalized weakness. Although fixed deformities of the joints are common, they are not present in all cases.
There are approximately 45 known types of muscular dystrophy and numerous unknown types. Steven is currently uncategorized and continues to be tested.
His parents say Steven’s health in the future remains uncertain.
Despite the gravity of Steven’s disease, the family’s primary insurance carrier is covering less than the bare minimum, they said.
Steven Pepi, an employee at a sea-shipping firm, said both Medicaid and his insurance company refuse to pay for either a wheelchair or specialized bathing equipment.
Steven, who is currently using a wheelchair rented from Children’s Specialized Hospital in Mountainside, is in desperate need of a new one, his father said.
"The wheelchair and bath seat are waiting for him. We can’t pick it up because no one is willing to assist us [financially]," he said.
The equipment is needed to keep Steven in an upright position so that he is able to develop his muscles.
In an effort to ease the Pepis’ financial burden, family friends Gail Micca of Freehold and Debra Barrow of Monroe have organized a fund-raiser for Steven’s equipment.
Both Micca and Barrow are demonstrators for Stamping Up, a company that specializes in teaching rubber-stamping techniques. Through the creation of a Stamp Camp Fund-raiser, both Micca and Barrow are hoping to raise at least $7,000 — the cost of the wheelchair.
"It is hard to believe in this world of high insurance premiums and high taxes, special babies like Steven are not able to receive such needs as a wheelchair and bathing equipment," said Micca, who also recently raised $2,700 for breast cancer research through a Stamping Up fund-raiser.
Michelle Pepi said she used to work on Wall Street, but now dedicates all of her time to caring for her son, something she says is very taxing.
"He has to be watched constantly," she said.
Due to Steven’s low muscle tone, he is unable to swallow. Michelle Pepi said she feeds Steven intravenously every four hours through a gastro-tube that has been placed in his stomach. In addition, Michelle Pepi uses a vacuum device to remove any secretions in his airways. If the secretions are released into his lungs, they could kill him.
Her husband’s insurance company is providing nurse service for 16 hours per day. However, the family says they need a 24-hour nurse.
Steven is currently seeing nine different medical specialists, and the family must travel frequently to doctors’ offices. Insurance will not cover visits to many of the family’s specialists, which include a urologist, orthopedist, neurologist, ear-nose-and-throat specialist, muscular dystrophy specialist, nutritionist, pulmonary and other types of doctors, said Michelle Pepi.
"We are not looking for handouts. We’re looking for a little bit of assistance because he has a catastrophic illness," Michelle Pepi said.
Steven Pepi said he finds himself in a no-win situation. Though he says he’s earning a middle-class income, he reports that he was informed by Medicaid that he earns "too much money" to receive more coverage.
"It hurts when you hear the government say, ‘You make too much money,’ " he said. "My response to them is: Every week you’re taking money out of my check. I’m not making too much money then.
"Born and raised in America, I never collected a day of disability or unemployment in my whole life, and I’m looking for a little help," he said.
Micca and Barrow said they have been actively promoting the fund-raiser. According to Micca, if even 300 people show up, they will be able to purchase the wheelchair.
"I know how hard it has been for the family," Barrow said. "I thought, ‘How wonderful would it be if we could raise the money for the equipment he needs.’ "
Both women confirmed that the Stamp Camp would be a wonderful time.
"Stamping is addicting," said Micca.
"People use rubber stamping to make beautiful hand-made greeting cards, scrapbooks, Christmas ornaments, boxes, bags, jewelry, artwork, and many other beautiful things," Micca said.
The fund-raiser will be held Oct. 17-18 from 7-10 p.m. at the Holy Trinity Church, 100 Main St., Helmetta. The donation cost is $30. All proceeds will go to the Holy Trinity Disabled Children’s Fund to provide for Steven’s expenses. Donations can also be mailed to Gail Micca at 59 Lake Drive, Freehold 07728, and can be made payable to the Holy Trinity Disabled Children’s Fund.
For additional information call Gail Micca at (732) 845-5079 or Debbie at (732) 656-1493.