patrick cote dies 7/10/01

Patrick Cote, 16 months old, dies Boy had rare immune deficiencyJoshua Williams Little Patrick Cote, son of Steve and Lisa Cote of Center Conway, never had a fair chance at life. Born with an extremely rare disease that doctors were unable to diagnose, the 16-month-old died on Saturday."We feel very fortunate that we had 16 months with Patrick," said Steve Cote. "We had many doctors tell us his chance of surviving even a few months was slim."Family and friends supported the Cotes throughout the ordeals of months spent in hospitals. The local community held numerous fund-raisers to help pay for Patrick's medical care."Our friends and the community support gave us the ability to leave work and be a parent for Patrick, and that's what kept him going," Steve Cote said. "That's the gift the community gave us. Patrick needed us, and we needed him."Patrick was born at Memorial Hospital on March 15, 2000. Ten days later, his parents noticed that he wasn't gaining any weight, and they brought Patrick back to Memorial to try to feed him. A tube was inserted through Patrick's nose to deliver nutrition, and he was allowed to go home again.But Patrick began to experience fevers and infections, and was brought to Dartmouth-Hitchcock Medical Center in Hanover. He had to stay at the Children's Hospital at Dartmouth for three-and-a-half months. The long stay at Dartmouth was only the beginning of Patrick's days in a hospital. For approximately 14 months of his short life, Patrick was in a hospital, under the careful watch and medical treatment of some of the best children's doctors in the country.The Cotes would rent apartments near hospitals on short term leases, and their routine was to spend 12 hours a day at the hospital.At one time, Patrick was diagnosed with Severe Combined Immune Deficiency, or SCID, but the diagnosis couldn't account for all the problems Patrick was experiencing.Doctors at the Massachusetts General Hospital for Children had recently said that Patrick had a T-cell deficiency. T-cells are the body's immune defense system, warding off diseases and infections. The deficiency caused a number of gastro-intestinal complications in Patrick.Patrick's parents tried to obtain a special medication that specialists thought might help his condition. The medication, though used in other countries, was not approved for use in the United States, however. Doctors at Massachusetts General went through the red tape of trying to get the medicine, and the FDA finally allowed the drug to be brought in for a trial use."The goal was to improve his quality of life so he could come home and we could feed him," Lisa Cote said.The medicine arrived last Monday, and by then, Patrick was not healthy enough to take it. "He would have been the first child in the U.S. to receive the medication," Steve Cote said. Patrick's condition had gone downhill the last few weeks, and he died Saturday at the Massachusetts General Hospital, of what Lisa called a system breakdown: his liver and kidneys had failed, and his blood was not clotting."Everybody tried so hard," Lisa said. "What Patrick had was so unique, they couldn't figure it out."The staff at Mass General became more than just medical providers for the Cotes: they became friends, as well as advocates, using their resources to try everything possible to help Patrick.Much of Patrick's life was spent in isolation, enclosed in a sterile, pressurized environment. "Near the end, they gave us clearance to take him on the stroller outside, sit on the grass, and go to the playroom," Steve said.Cote, a general manager at Ossipee Insurance Agency, thanked his employer for the "amazing support" he received, which allowed him to concentrate on his family and spend his days at the hospital.