Beating The Odds: A Journey Of Survival

PHILADELPHIA INQUIRER Copyright (c), Philadelphia Newspapers Inc. TAG: 9002230046 PAGE: N03 LENGTH: 86 lines EDITION: PENNA SECTION: NEIGHBORS NORTHEAST GRAPHICS: PHOTO DISEASE UNDERCUTS THEIR JOY SOURCE: By Gayle Anderson, Inquirer Correspondent TEXT: Everything seemed to be going perfectly in Michael and Julie Barrons’ four- year marriage. Then, last December, doctors told them that their youngest son, Brian, then 4 months, had a rare congenital disease and probably would not live to see his first birthday. “I don’t even remember what the doctor said after he told us,” said Julie Barron, 25. “I saw his mouth moving, but I heard nothing ... I guess I was in shock. It felt as if someone had just punched me in the stomach.” Brian had begun to experience seizures that made his little body shake, his eyes roll toward the back of his head, and his breathing turn shallow and sporadic. During these frightening episodes, it seemed as if he were gagging on something, then his body would become still. “We would rush him to the hospital,” said Julie Barron. “But the doctors were never able to find anything wrong. By the time we would reach the emergency room, he would be back to normal.” The Barrons’ physician recommended that he be hospitalized for a series of tests. Soon, the Barrons had a pediatrician, a neurologist and a macrobiotics specialist working on Brian’ case. The doctors a series of tests over 48-hours, then retested him four more times to confirm the rare diagnosis. Brian was diagnosed with congenital lactic acidosis, a condition that leads to progressive neurological degeneration and, in most cases, death. The Barrons were told that there was no treatment, no cure, and no promises for Brian’s future. “I just couldn't believe it,” said Michael Barron, a 27-year-old truck driver. “I couldn’t understand it. Why us? Our hearts were broken.” Mortality rates among those diagnosed with the condition is bleak – 60 percent to 80 percent. “Lactic acidosis is a symptom of a few different diseases that show up,” said Paige Kaplan, a doctor specializing on conditions that affect the metabolism. “It can show up at birth or it can come about later in life. The earlier the symptoms show up in life, the worse the outlook is for the patient.” Symptoms of the disease vary, but frequently manifest in a lack of oxygen in the tissue, which often results in damage to the nervous system, muscles, and major organs. “Nationwide an estimated one in 15,000 to 18,000 live births per year have been diagnosed with some form of this disease,” said Peter Stacpoole, an endocrinologist associated with the University of Florida’s Shands Hospital in Gainesville. Stacpoole is heading a nationwide study of the scarce data available on the disease. Brian’s case resulted from a genetic disorder that caused improper development of a key enzyme – PDH – which breaks down nutrients for absorption in the body. The infant’s muscle development lags far behind children of his age. He cannot drink from a bottle or eat off a spoon. His body requires a special high-fat, low-carbohydrate diet, feed through a tube taped to his side that stretches through his nose and down to his stomach. “I have often asked God why couldn’t I have miscarried if this was going to happen,” Julie Barron confided. “Why my son ... what did we do wrong?” For the moment, Brian has managed to outlive the odds weighing so heavily against him. He reached his first birthday Aug. 10 and despite of the illness, he is the quintessential chubby-cheeked toddler. As he rolls across the carpet in his walker, bright-eyed and revealing five new teeth in a seemingly endless smile, Julie outstretches her arms. During his feedings, she turns his favorite toy, a Sesame Street gizmo replete with catchy tune and cartoon characters, then scrambles to catch him in mid-roll. She attaches a 2-ounce syringe containing the special formula to his feeding tube. “He must have 30 ounces of this formula a day,” she peers at the liquid flowing through the syringe into the tube. But toddlers have more important tasks to undertake and Brian soon cries out in frustration. He wants to cruise the room and has little patience for feed tubes and formulas. “Don’t cry, Brian.” his older brother, Danny, 3, kisses the toddler’s forehead. “It’s exceptionally important that he not cry,” Julie shared, encouraging her oldest son to play with Brian. “If he cries, it may cause him to go into a seizure and if that happens,” she inhales, “he could die.”

Michael Barron rubs his wife’s back, taking hold of the syringe, “Deep down inside,” he says, “I try to convince myself that he is not going to die.” CAPTION: PHOTO (3) 1. Julie Barron plays on a sofa with son Brian, 1, who has the rare condition lactic acidosis, and son Danny, 3. (The Philadelphia Inquirer / DAVID T. FOSTER 3d) 2. Julie Barron holds Brian while her husband, Michael, puts water into the tot's feeding tube. (The Philadelphia Inquirer / DAVID T. FOSTER 3d) 3. Julie Barron cuddles Brian, whose illness afflicts 1 baby in 15,000.

PHILADELPHIA INQUIRER Copyright (c) 1995, Philadelphia Newspapers Inc. DATE: Sunday, April 23, 1995 PAGE: R06

LENGTH: 101 lines

SECTION: REAL ESTATE GRAPHICS: PHOTO AND DIAGRAM MEMO: FOCUS ON HOUSING II TAG: 9501240159 EDITION: FINAL HISTORIC TEXTILE MILLS ENJOY A REBIRTH, FIND NEW LIFE AS A HIP, URBAN VILLAGE SOURCE: By Gayle Anderson, FOR THE INQUIRER

* TEXT: Chelsea Village, 4041 Ridge Ave., Philadelphia The essence of Chelsea Village is its industrial past, but its charm is in how the old blends with the new. Inside the fortress, east of the Twin Bridges, at 4041 Ridge Ave., sits a $65 million development of eclectic architecture, themed landscapes and todie-for apartments. The old Dobson mill sweatshops are gone. Replacing them are studios to two-bedroom flats, lofts and townhouses ranging from $595 to $1,350 a month. "The exterior kind of shocked me at first," said Raphael Monroe, a 36year-old entrepreneur. "It's very dead and gloomy-looking on the outside .... But behind the gates, it's like an ultra-modern community," he said. Antebellum motifs dating to 1850 grace every inch of the four refurbished mills (11 unrestored) nestled amid 13 acres of cascading gardens and stone water fountains. Each edifice is clad in original Wissahickon schist, an indigenous darkgray stone. There are 42 floor plans and 129 units - from studios (525 square feet) to two-bedroom townhouses (1,350 square feet). In this showcase listed in the National Register of Historic Places, you can find potbelly stoves, vaulted wood-beam ceilings, deep-dish windows, skylights, exposed brick walls, recessed lofts, and private enclosed patios. The Apartment Association of Greater Philadelphia awarded three annual honors to Chelsea for historic value, management quality and environmental awareness. "I found this place through a friend and liked the high ceilings, large windows and distinguished look," said Monroe. For five months, Monroe, the owner of a copier service and other businesses, has rented a one-bedroom loft with private garden and patio. "I think it attracts professionals who are financially comfortable and in need of lots of privacy, comfort and all the luxuries

of a well-equipped home," he said. Those luxuries include 24-hour security, free indoor parking and cable