Written by Ben’s parents, John and Carrie….
Ben was born, May 2012 and as soon as he was born, we heard his breathing was different. From that day forward, we started our journey to discover with what Ben was going to face in life. Through many specialists involved and lots of testing, we determined that Ben has two conditions that are unrelated but together have caused Ben to have life-threatening symptoms (tracheal and laryngeal malaysia & Mediterranean Fever Syndrome). His condition is extremely rare and he’s been diagnosed with a severe case, which is not curable. Since birth, Ben has had over 65 trips to the hospital. Every month, Ben has an inflammatory episode, which causes all his tissues to be inflamed, leading to fevers from 102 to 108, tremendous abdominal pain and joint swelling that may lead to a shortened life expectancy due to organ failure. He also produces very thick mucous during fever episodes and has a difficult time eating and breathing (which is exacerbated by the weakened airway). Due to both conditions, Ben has a severe speech delay. Ben has been through a lot of treatment for both conditions. We manage his day-to-day health, and try to get him to
a special school funded by the state which is covered half the day. The other half of each day we pay for a day care that works with his school, however he is ill so much that we redundantly pay for babysitters to stay home with him as well. We’re hoping through this campaign to raise money to support Ben’s therapies, medications and caretakers when he can’t go to school. In addition, we are looking into arranging a trip to the Mayo Clinic in Minnesota, the only location of a specialty center in the world focused on his syndrome to get more answers and guidance on his care. We try to remain positive, but we’re struggling to both work due to all of his care which will impact our ability to pay our bills. We’re also trying to provide a quality of life that allows for him to have some normal experiences outside of a hospital and support our older son, Jack without having to leave our home and disrupt our lives any further. Any help is appreciated and thanks for taking the time to learn about our family.
Update January, 2016: The Falcone family is doing the best that they can to live a regular life managing all the family responsibilities and frequency of Ben’s illnesses and doctor appointments. Recently, the level of stress triggered an autoimmune response in Carrie. She is now struggling with Lupus which is causing her joints to be inflamed and lock. Steps Together is stepping in with other organizations to provide assistance to the Falcone family and spread their prayer chain.