Highland Mills fundraiser to help ‘bubble boy’ set for Nov. 21

Family cope must with the financial stresses of the health care system for a disease where there are no antibodies, By Nancy Kriz HIGHLAND MILLS - Panhypogammaglobulinemia is a tough word to pronounce and an even more difficult disease to treat, but a Highland Mills pediatric occupational therapist is hoping to bring attention to this rare disorder and help a Washingtonville boy afflicted with it. Laura Stubecki of Pediatric OT Solutions in Highland Mills is holding a fundraiser on Saturday, Nov. 21, for John “J.J.” Honan, whose immune system can’t fight off infections. His current treatment is in the form of experimental transfusions, with most of it not covered by insurance. She used the colloquialism “bubble boy” disease to describe J.J.’s ailment, often used to refer to a person who must live in a sterile environment for medical reasons. That term evolved after the 1976 television movie, “The Boy in the Plastic Bubble,” aired. J.J. was a past patient of Stubecki’s and when she learned of the family’s predicament, she knew she had to help. “I felt compelled to use my office to help them,” said Stubecki. “There’s the awareness (of the disease) that’s coming about. People are jumping forward to help them.” J.J.’s mother Liz Honan is also hopeful to increase awareness of J.J.’s disease. “In the most simplest terms … it means he lacks antibodies to fight infection,” said Honan, who agreed with the usage of the “bubble boy” terminology. “What this disease does is attack the weakest part of your body and for J.J. that is his lungs.” J.J. Honan and his brother Eddie get friendly with some Star Wars creatures during a Star Wars weekend in Disney World in Florida. Honan explained that J.J. “will pick up anything. It goes right to his lungs and he can stop breathing.” He’ll get severe asthma-like symptoms where not enough air gets into his lungs. At times, she added, he’ll need to be on steroids for long periods of times to keep his lungs open and functional. Sometimes, he’ll need to be hospitalized for intravenous steroids. While he’s enrolled as a student at Washingtonville Middle School, he’s currently being homeschooled because the H1N1 virus is becoming more widespread. “If he gets the flu, it would kill him,” said Honan. Asperger’s syndrome The transfusion treatments he had been receiving were experimental, and Honan said they were seeing improvement in his condition. “In the beginning, I wasn’t so sure about this (treatment),” she said. “He would be in the pediatrician’s office three or four times a week. He would be constantly sick. But now, we’re not there that much. He has gotten better. His numbers have gone somewhat higher. I know this is working. We’ve cut 100 times being sick down to 50. That’s an improvement.” But Honan’s stress level is further heightened because she also has to deal with the financial side of J.J.’s health care. J.J. — who also suffers from Asperger’s syndrome, a high functioning level of autism — doesn’t qualify for Medicaid because the family’s income is too high. Because his IQ is too high, his mother said, Medicaid has declined to issue a waiver to qualify him. “We’re in a Catch 22,” said Honan, who has two other children, of the Medicaid issue. “And our insurance basically covers nothing. We have a $5,000 deductible on J.J. alone. The insurance doesn’t cover experimental treatments.” Honan also said that J.J.’s current immunologist has stopped treating him because of the family’s inability to pay. “He left a message on our answering machine saying ‘it’s not profitable’ to treat J.J.,” said Honan. “I told him that I would get him the money, I just don’t have it now. He’s sent us letters saying he hoped he does well but he won’t treat him. Medicine is not about money, it’s about healing.” Honan also knows that J.J.’s disease could cause him to develop lymphoma. She’s been able to get the Memorial Sloan-Kettering Cancer Center in Manhattan to agree to treat him, and a visit to the New York City hospital is being set up. “We still have to make payments,” she said. “My insurance won’t cover all of it. But they supposedly take payments. If they will take $20, that’s great.” Six jobs, looking for a seventh With all this, Honan’s husband works 12 hour days, six days a week. She also works three different jobs herself, including selling homemade baked goods. “I’m trying to see how I can pick up a fourth job,” she said. “I don’t know what this new treatment will entail. As long as J.J. continues to get his care I don’t care what we have to do. We would sell our house and live in a box if need be.” When Stubecki approached her with the idea of a fundraiser to assist the family, Honan was overwhelmed. “I am shocked beyond belief,” she said. “This (Stubecki’s fundraising) is coming out of the past. She used to be his OT teacher. I’m not used to this. We’ve been trying to do everything on our own.” She’s grateful beyond words for the fundraising event Stubecki’s planned but wants it to serve another purpose as well, particularly in light of the ongoing health care reform debate taking place in Washington, D.C. “I also hope that it also puts some light on the fact that this could happen to anybody,” said Honan. “You can be in the same boat as we are tomorrow.” And as a mother, Honan vows to continue to fight for her son and his medical care needs. “Sick kids deserve a chance to be children,” she said. “He’s a good kid. He’s a happy kid. He’s the most unbelievable kid I’ve ever seen.” Sick kids deserve a chance to be children. He’s a good kid. He’s a happy kid. He’s the most unbelievable kid I’ve ever seen. I also hope that it also puts some light on the fact that this could happen to anybody. You can be in the same boat as we are tomorrow.” Liz Honan Can you help? • The fundraiser for Washingtonville resident J.J. Honan, a 12-year-old boy suffering from Panhypogammaglobulinemia, along with Asperger’s syndrome, is Saturday, Nov. 21 from 11 a.m. to 3 p.m. at Pediatric OT Solutions, 615 Rt. 32 in Highland Mills. All proceeds will benefit J.J. and will be used for medical expenses not covered by insurance. His experimental transfusion treatments, which are helping, are not covered by insurance. • Activities for children include a bounce house, obstacle course and crafts. For adults, there will be raffles for gifts and services; and gluten-free baked goods for sale. • Admission is free with $1 tickets sold at door for each event and raffles. Baked goods priced separately. • For additional information, call Laura Stubecki at 234-6077.