Wednesday, January 20, 1999

Social Security won't recognize child's rare disease

The Cincinnati Enquirer

Abby Perkins-Banks can't be exposed to the sun, so her window has a special filter.
(Gary Landers photo)

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        MIDDLETOWN — Darkness is Abby Perkins-Banks' best friend and sunshine her deadly enemy.

        The child with ice-blue eyes and a ready, mischievous grin suffers from a rare genetic disorder called xeroderma pigmentosum (XP).

        The disease makes the deeply freckled blonde extremely sensitive to ultraviolet rays both indoors and outdoors and highly susceptible to skin and eye cancer. Doctors say the 5-year-old girl has the skin of a 50-year- old woman.

        The XP prevents her body's DNA, or genetic blueprint, from repairing itself. The damage is cumulative and irreversible. But there's another problem: Abby's disease is so rare it is not considered a “disabling” condition by the Social Security Administration.

Abby can't go out without every inch of her body covered by a special fabric that blocks ultraviolet rays.
(Gary Landers photo)

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        On Tuesday, Abby's mother and a Dayton, Ohio, lawyer asked Social Security Administrative Law Judge Thomas McNichols to declare the child disabled so she can gain Medicaid and Supplemental Social Security Insurance (SSI) benefits.

        It is the fourth time since October 1995 that her parents have tried to gain these benefits for Abby. A decision is not expected for 60 to 90 days.

        “I feel like I've sentenced her to death by giving birth to her,” said an emotional Caroline Perkins-Banks minutes after her SSI hearing in Dayton.

        Her husband, Doug, stayed home with Abby and their 21-month-old daughter, Adrianna, who shows no signs of XP.

        Tuesday's hearing was closed, and Social Security officials could not be reached for comment.

        Abby's parents and the family's lawyer said they have been told the federal government has tightened restrictions about granting SSI benefits to children. Because XP is not on the “disabling list,” Medicaid and other benefits have been refused.

        “Abigail's medical problems don't prevent her from doing most of the activities usually done by a child of this age. Therefore, she is not considered to be disabled,” a Social Security employee wrote to Abby's family Aug. 16, 1996.

        One of Abby's doctors, Dr. Anne Lucky, a pediatric dermatologist with Dermatology Associates of Cincinnati and Children's Hospital Medical Center of Cincinnati, said she cannot understand why Abby has been denied SSI.

        “It boggles my mind,” she said. “I can't imagine that anyone would not see this is a severe disability,” Dr. Lucky said. “Having to have many plastic surgeries to remove skin cancer and not being able to go out in daylight is a severe disability. Because of this XP, these children basically have to live in the dark.”

        Mrs. Perkins-Banks said they are fighting for the SSI and Medicaid benefits for financial reasons.

        Insurance does not cover the estimated $1,200 spent annually for skin-care products. Protective outfits for indoors — costing as much as $110 apiece — also are not covered.

        The family also has spent $15,000 to put a special coating on their home's 15 windows to filter ultraviolet rays that can harm Abby.

        “But I'm mainly doing this so if something should happen to us my daughter will be taken care of,” said Mrs. Perkins-Banks, a licensed practical nurse who is not working so she can stay home with her daughter. “And I want people to know there are children out there that have needs that aren't being met.”

        Abby is one of fewer than 1,000 children worldwide with the incurable disorder. The only way she can go outside is to travel at night or wear a NASA-designed suit with goggles and gloves that hide every inch of her body from the sun.

        Extended exposure to the sun would kill her.

        Even indoors, she wears special clothing and a 60 sun-protection-factor sunblock. Light bulbs cannot exceed 60 watts.

        Because playing outdoors is a rare treat — and impossible until she got the NASA suit — Abby's mother brought the outdoors into her room.

        Swirling blue clouds adorn the top of her walls. A real picket fence sits along the bottom of the wall, with painted flowers along its top.

        Before Tuesday's hearing, as Abby and Adrianna played in a basement room full of games and toys, Mrs. Perkins-Banks told how Abby began showing signs of the disease at 9 months old. She screamed when the sunlight hit her, even through car windows, and her eyes often reddened.

        “If she walked outside right now, she would drop to the ground screaming in pain when the light hit her,” Mrs. Perkins-Banks said.

        The XP has caused Abby to develop several skin cancers that have been cut out — five times since June — and a spot on her eyelid will be removed next month. Every piece of skin removed from her tiny face is a great and noticeable loss, Mrs. Perkins-Banks said.

        Frequent removal of skin cancers often leaves XP children disfigured, Dr. Lucky said, but the cancers can be fatal.

        Abby is one of the more fortunate XP children. In November she got the NASA suit, which filters out 99.9 percent of ultraviolet rays.

        The suit was designed from material that protects astronauts during spacewalks. It includes a head cover, gloves, face mask and a cooling vest, since the material does not breathe. It lets her be outdoors up to three hours before the coolant needs to be refrigerated again.

        A Virginia charity worked with the Johnson Space Center in Houston to get the suits, said Sarah Moody, founder and president of the nonprofit HED Foundation.

        Ms. Moody contacted NASA in 1986 and pleaded for help in getting some special clothing for her nephew who was born with no sweat glands — the byproduct of a disease called hypohidrotic ectodermal dysplasia.

        Last year, NASA called her to help spread the word about the new suits. Supermodel Christy Turlington heard about the HED Foundation's work and asked Ms. Moody how she could get involved. That led to the model contacting Abby's mother.

        Ms. Turlington paid $2,000 for two suits for Abby.

        The Middletown girl keeps a picture of the dark-haired model hanging over her bed, calling her “my angel on Earth.”

        Abby said she loves her suit because it allows her to go outside, but sometimes people say unkind things when they see her. Some call her an alien.

        “It makes me feel bad when people stare at me in my suit. I wish I could go outside and play more often,” she said. But the worst part about having XP is “having all the yucky surgeries,” Abby said.

        Her mother said people need to realize that children notice when people treat them differently or rush their own children away, and it hurts deeply.

        “She is not contagious. You can't catch this from being around her,” she said.

        Mrs. Perkins-Banks speaks openly with Abby about the disease, its potential for cutting short her life and her hope for her daughter.

        “I tell her she is going to be a leader — a pioneer for other children who suffer from this.

        “If Abby is going to have this and die from this, I want her to die with dignity,” she said.


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