Fight against ‘Bubble Boy’ syndrome
Monday, January 28th 2008, 4:00 AM
Vicki and Fred Modell want to spare others their pain.
Through the New York couple’s efforts, hundreds of thousands of newborn children around the world will be screened for Severe Combined Immune Deficiency (SCID), or “Bubble Boy” syndrome.
SCID has many forms but virtually the same impact: Children born with it have compromised or nonfunctioning immune systems that leave their bodies susceptible to a long list of often fatal infections.
Health officials estimate that 1 in every 100,000 newborns has some form of SCID.
But Dr. Jack Routes, medical director of Allergy and Clinical Immunology at Children’s Hospital and Medical College of Wisconsin, said, “We really don’t know how prevalent it is. We know it is more prevalent than that, but a lot of these kids die without being diagnosed.”
Fred and Vicki Modell lost their son, Jeffrey, to Primary Immunodeficiency (PI) in 1985. He was 15 years old.
Their pain is still evident 23 years later as the parents recall his life; the too frequent emergency room visits and hospital stays, the painful gamma globulin injections to ward off infections and, most difficult, the years of his life spent not knowing what was wrong.
“I remember Jeffrey saying he wished he had leukemia, because then at least he would know what was wrong with him,” Vicki said.
After Jeffrey’s death the Modells got to work. Fred, who runs a wholesale jewelry business, and Vicki, who has long been active as a fund-raiser in the city, in 1987 founded the Jeffrey Modell Foundation to promote screening and treatment for all forms of SCID.
There are now 36 Jeffrey Modell Centers worldwide, from the United States to Australia, Europe and South America to the Philippines. Last year, the Jeffrey Modell Immunological Center opened at Harvard Medical School.
This month, the Modells – who have a daughter, Lori – returned from Japan, where they not only opened a center in Toyko (most of the centers are formed in conjunction with hospitals, universities and other health organizations) but the Japanese government offered to partner with the foundation to promote physician education and public awareness of PI and to make other changes in how the disease is treated there.
“Even for us, this is really exciting,” Fred Modell said. “We had a real signing ceremony and everything. It was very exciting.”
On Jan. 1, Wisconsin became the first state to test its newborns for SCID – some 70,000 children are born there annually.
The Wisconsin program came about after Routes met the Modells while the couple was making a presentation to health officials at the Centers for Disease Control and Prevention in Atlanta a year ago. Largely through the Modells’ lobbying efforts, Congress funded grants, to be administered by the CDC, to pay for SCID testing programs.
“Fred and I started talking,” Routes said. “He said the foundation would offer $250,000 to get the program off the ground if we could match that. Children’s Hospital in Wisconsin matched it, and everything went really fast after that.
“The Modell Foundation is the one who jump-started this,” Routes said. “[Wisconsin Gov. Jim] Doyle got behind it, But nothing would have happened without the Modells. They are incredible.”
The foundation will host its “Spring Ahead” fund-raiser April 24, at Cipriani 42nd St. Jeff Blau of the Related Companies is the honoree.
For more information on the benefit, call (212) 819-0200. To learn more about the Jeffrey Modell Foundation, go to the Web site, www.info4pi.org.
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