The Denver hospital joined a host of others unable to diagnose Andy's sickness. Not one of the nearly 70 doctors and specialists seen Andy since birth could tell his parents, Andres and Paulina Trevino, why their son continued having deadly,chronic infections.

After he returned to Mexico, his condition worsened.

He now had eight intravenous lines injecting medication and nutrients into him to keep him alive. His parents began to believe their son might not survive. But, they were willing to travel thousands of miles to find treatment for Andy.

A surgeon at Hospital Angeles in Mexico suggested they go to Children's Hospital in Boston for help. Dr. Roberto Kretschner, a longtime friend, also recommended to the Trevinos, who now live in Auburndale, that they go to Children's Hospital. Dr. Kretschner interned as a resident at the hospital in the 1970s.

Research breakthrough

The Trevinos arrived at the Children's Hospital emergency room on a rainy night in September 2000 with only two bags in hand, Trevino said. Andy was in his carriage dying from a blood infection exacerbated by a high fever and diarrhea.

Andy was admitted to the Clinical Research Center where he would be tested after seeing a cadre of doctors.

Andy's arrival gave the department of immunology of Children's Hospital a breakthrough in their research of mutated genes and primary immune deficiency. Prior to Andy's arrival a collaborative effort of scientists identified specific mutations of NEMO genes, Dr. Jordan Orange of Children's Hospital immunology department said. Orange and Children's Hospital Boston were part of the collaboration.

But, researchers did not yet connect the NEMO gene mutation with primary immune deficiency and ectodermal dysplasia. Researchers learned from Andy's DNA in October 2000 that a mutated NEMO gene causes both primary immune deficiency and ectodermal dysplasia, Dr. Orange said.As a result of the mutated NEMO gene Andy has conical-shaped teeth, sparse hair, and a weakened immune system, Dr. Raif S. Geha, chief of the allergy, immunology, rheumatology and dermatology division of Children's Hospital said. A mutated NEMO gene is a "relay gene" controlling skin, hair, and immune systems, said Dr. Hashish Jain, who studies immune deficiency at the Laboratory of Clinical Investigation of the National Institute of Health in Bethesda, Md.

Ectodermal dysplasia usually is manageable but can be deadly when combined with primary immune deficiency, Dr. Jain said. For example, it may be difficult to clear an upper respiratory infection caused by poor mucus secretions in both the respiratory and nasal systems because of the weakened immune system.

Mutated NEMO genes block messages normally sent between the membrane and nucleus of the cell causing its defenses not to work.

A person with ectodermal dysplasia syndrome has poorly developed sweat glands, hair follicles, and conical shaped teeth caused by a NEMO gene mutation, Dr. Jain said. Ectodermal dysplasia prevents sweating, Mary Kaye Richter, executive director of The National Foundation for Ectodermal Dysplasias of Mascoutah, Ill., said.

Richter, also co-founder of the foundation, said that most of the 150 types of ectodermal dysplasia syndromes are not fatal. All ectodermal dysplasia syndromes are acquired prior to birth through the X chromosome, Richter said. Seven out of every 10,000 people have the syndrome according to "The Birth Defects Encyclopedia."

"Attitude of the family has much to do with the impact on a child's life" because it is a lifelong disease, Richter said. Children encouraged to cope with the syndrome live full lives. Andres Trevino said he teaches Andy how to live a full life and to care for himself.

Lifelong battle

For example, Andy is taught how to stay cool in hot weather because he cannot sweat. By not sweating his body temperature would rise to dangerous levels.

Trevino said his son is currently treated with gamma globulin every two weeks, provocative antibiotics, and antiviral medications for the primary immune deficiency. Gamma globulin is antibody taken from donated blood and then infused into the patient to strengthen the immune system.

Andy's father believes the best long-term treatment for his son is bone marrow transplant or gene therapy. Dr. Geha said he believes bone marrow transplant is the most feasible long-term treatment for Andy because gene therapy has been discontinued as a result of two children in France who developed leukemia from it.

During a bone marrow transplant stem cells are transferred from the healthy person to the sick person. These cells then grow into healthy red blood cells, white blood cells, and platelets.

To cover the cost of care Andres Trevino has raised money in collaboration with Children's Hospital and on his own. He sells autographs of public figures, baseball caps, and phone cards inscribed with Andy's face to raise money. The money is placed in a fund that he created in 2000, the "Andy's Fund." The Children's Hospital Trust now manages it, Trevino said.

Dr. Geha, chief of the Allergy, Immunology, Hematology and Dermatology Division at Children's Hospital, said the Andy Fund "supports research in primary immune deficiency." Dr. Geha leads research efforts on primary immune deficiency and the NEMO gene supported by the Andy Fund and other funding.

Trevino said he raised $25,000 for the Andy Fund by using a Web site he created in Mexico City to communicate with doctors in Houston about his son. He now uses the site to reach a large number of people beyond Boston to compensate for the small network he has in the city.

Using the Web

Web sites created by individuals to raise money are becoming more common, Leslie Ball of Northeastern University's college of business administration said. Ball, senior executive professor and an expert on e-business, said the site works well because it encourages a large audience to support Andy.

John Sellars, an expert on fund-raising and financial management said it is becoming common for nonprofits to raise money through the Internet but not individuals. Gifts given through the Internet tend to be small because people sometimes have a difficult time verifying the sites authenticity.

He thinks such a site may "raise flags" for a Web user unless the user knows the creator. Trevino's online fund-raising gains credibility because it is associated with Children's Hospital through the Andy Fund, Sellars said.

The Web site, www.andy.org.mx, describes Andy's syndromes and includes an explanation of the immune system, a list of Andy's hospital stays, names of Andy's therapists and doctors, possible therapies and links to fundraising efforts.

Dr. Geha said treatment and expenses, covered by the hospital through National Institute of Health grants and research funding, have cost about $300,000 since September 2000.

Andy was released in October after being treated with intravenous antibiotics. The Trevino family returned home in Mexico City, but the stay was short. In March the Trevinos permanently moved near Boston for the sake of their son.

At the age of three Andy tries to live a normal life, according to his father, despite the 493 days of hospitalization, nine blood transfusions, 89 doctors seen, and numerous infections that are listed on www.andyfund.org/mx.