A Mother Trying to Put Some Joy in What Remains of Her 2 Children's Lives
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A Mother Trying to Put Some Joy in What Remains of Her 2 Children's Lives
Santa Artiles says that her most fervent wish is that a cure will be found in time to save her 5-year-old son and 3-year-old daughter from the rare blistering disease that is torturing them as it is killing them.
But she also knows that such a development is not likely, so her second-strongest wish is that "I make their time joyful for whatever time they have left."
Joyfulness is at a premium in the cramped, one-bedroom Bronx apartment where Ms. Artiles, 35, a single mother, lives with the children, both of whom are severely disfigured, internally damaged and often in pain. The boy is largely immobile and is nourished through a feeding tube; the girl drinks liquid nourishment.
The children, John and Maria Valerio, have epidermolysis bullosa, a condition that is usually genetic, in which the skin is so fragile that just slight friction and overheated rooms can cause blisters.
The illness can range from mild, with minor skin blistering, to the lethal form that Maria and John have, in which the external blisters and the permanent scars they cause are large and blisters also form in the mouth and the linings of the esophagus, stomach or other organs.
That precludes solid food, and malnutrition is a threat, along with fatal infections. The mortality rate in the severe cases is "very high," often coming in childhood, according to the National Institutes of Health. It says that as many as 12,000 Americans have epidermolysis bullosa, from the mild form to the deadly.
Though a social services group provides a daytime home health aide and Medicaid pays for the children's medical, drug and liquid nourishment expenses, the family struggles financially, Ms. Artiles's social worker, Margarita Colon, said. She said that Ms. Artiles's $1,000 a monthly federal Supplemental Security Income check and $70 in food stamps, is not much larger than her rent of $700 a month.
Ms. Artiles, who immigrated from the Dominican Republic in 1994, said the children's father did not live with the family and did not contribute to their support.
The family's daily routine, she said, begins with removing the gauze wrappings that cover virtually the entire bodies of the children. They are gingerly bathed, their skin is treated with ointment and their bodies are rewrapped. "It takes about two and a half hours with John and an hour with Maria," she said.
Ms. Artiles's sister, Afrada Artiles, lives with them and helps to care for the children at night, Ms. Artiles said. The four and their separate beds are crammed into the small bedroom. The children are often awake because of their pain and itching, and "some nights I don't sleep," Ms. Artiles said.
Ms. Artiles, a factory worker until she became pregnant with John, recalled that doctors said after his birth that "there was a 50-50 chance" that a second child would be normal and advised her that the fetus in any future pregnancy be tested.
But when she became pregnant again, the test was delayed because of a doctor's long vacation, Ms. Colon said, and by the time it was done and revealed the disease, Ms. Artiles was five months pregnant. By then, she said through Ms. Colon, who translated, "the baby was already moving" and her "belief system" kept her from having an abortion.
After Maria was born, Ms. Artiles became a client of Ms. Colon's in the home-care program of St. Mary's Healthcare System for Children. Ms. Colon introduced her to the Mosholu-Montefiore Community Center in the Bronx, a beneficiary agency of UJA-Federation of New York, one of the seven charities supported by The New York Times Neediest Cases Fund.
The center, among other things, provided Ms. Artiles with $1,500 from the fund for a clothes dryer and clothing for the children.
The family's pressing need is for a larger and healthier apartment, Ms. Colon said, and they recently joined the Housing Authority's long waiting list. Poor ventilation in the current apartment makes it stifling in summer and often overheated the rest of the year, worsening the children's illness, she said.
And a larger apartment would make it easier for the physical therapists and the home schooling teacher who work with the children there.
"John never spoke to me till the teacher showed him how," Ms. Artiles said. "Three months ago, for the first time, he called me Mommy."
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