COMMUNITY SPOTLIGHT by Delia Howard Each month “Community Spotlight” features Tucson women making a difference in the lives of other Tucson women. If you know a woman who should be covered, email Delia Howard at public@GoodNewsTucson.com September 2006 A Mother’s Refusal To Give Up Sam wanted Krispy Kreme donuts for his birthday party at school. His Mom, Michele, knew he couldn't eat them. He could only tolerate seven foods without getting sick. Sam's story is about how one Mom and her family, in a desperate attempt to discover why their son was ill, embarked on a journey of faith that led them to discover their son's disease and to introduce a bill into the Arizona Legislature that would help other kids like Sam Racioppo. He was a happy, bouncy five-year-old boy in kindergarten until he came home sick one day. Thinking he had a virus, Michele and her husband Rocco, kept Sam home from school. But the bug they thought Sam had, didn't go away. They began a series of trips to pediatricians and specialists, trying to discover what was wrong with their son. The final diagnosis came back as acid reflux. "But, none of the medicines prescribed for him were helping," Michele said. "He went through three endoscopies, but they couldn't find anything. He continued suffering headaches and stomachaches. It was so hard for all of us to see him so sick." Sam's condition would ebb and flow. One morning as Michele sat outside praying and reading the Bible, she cried out to God to miraculously heal Sam or direct her to the help they needed. "I was so tired," Michele explained. "Suddenly a small hummingbird flew in front of me and just hovered inches from my face. It just stayed there for awhile. I knew in my heart then that God was telling me Sam would be OK and not to give up hope." Determined and with a renewed spirit, Michele continued to seek medical advice and search the internet for any medical information that could help. One evening, when the family went to bed, Michele said she felt the Lord encourage her to try the internet one more time. " I'd been over so much of the same information so often," she said, "but this night I saw some information about Philadelphia Children's Hospital that gave me new hope." They decided to take Sam there to see a specialist even though their insurance company would not cover it because it was out of network. Dr. Jonathan Markowitz, a specialist at the hospital, helped them find the right diagnosis for Sam, and became not only their trusted physician, but a friend. Sam had Eosinophilic Gastrointestinal Disorder. Also known as EGID, this disease that usually affects children, causes the white blood cells to attack their digestive systems. The answer was to insert a feeding tube into Sam's stomach where he receives the majority of his nourishment. " Then it became our job," his Mom added, "to begin introducing foods one at a time into his system to see if he could tolerate them." Michele, along with her good friend, Denise Bianchi, created a support group in Tucson for families affected by EGID. One of their biggest concerns was the high cost of the feeding tube formula, over $1200 a month. "Most of the insurance companies in Arizona would not cover it," Michele said. Both she and Denise, with the support of State Representative Steve Huffman, introduced a bill into the House and Senate asking insurance providers to cover the costs of the formula. " We went back and forth to Phoenix so many times," she said. "We were allowed to speak before both the House and Senate. It took about six months, but the bill passed and was signed into law by the governor. "Now insurance companies in Arizona have to cover 75% of the cost of the formula," she explained. " It's been a journey through faith," she quietly said, with tears in her eyes. "Sam is such a happy boy and to look at him you would never know what he goes through. He plays ball and enjoys school. Sam is my hero and so is his little brother Matt." This is a family of heroes. Michele tells the story of how she wanted to go on a special school field trip with Matt. "He has sacrificed so much because of all the time and attention for Sam's medical needs." Before the trip, Sam's stomach feeding tube broke and it meant they would have to go to the hospital. Torn whether she should go this time with Sam or go with Matt, her youngest boy came up to her and said, "Mom you go with Sam. There will always be other field trips." As for the Krispy Kremes, Sam did take them to school for his birthday. He couldn't eat them, but his friends could. He was able to drink the lemon Eegees as one of the seven foods he can tolerate. For more information go to the EGID website at: www.Eosinophilictucson.com
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