BEN’S STORY:
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.
Update January, 2018:
Benjamin is sick each month, requires multiple doctor appointments, days home sick and it is very difficult for his parents to maintain full time jobs to care for him and pay for the extra support we need to care for him (babysitter/caregiver, therapies) and the general impact to our family. Benjamin’s brother who is 8 experiences high anxiety due to the many nights we have had to leave to take Benjamin to the hospital or frequent doctor appointment. We have recognized this and he goes to therapy to support him to cope. Benjamin’s parents need to do the same. Ben has recently been diagnosed with ADHD and a neuromuscular disorder in which they believe is an impact on his brain due to his fevers as well as ADHD. He is in kindergarten and is in pain most days and needs to sleep for 3 to 4 hours as his body deals with chronic pain which exhausts him. The school has identified that there are significant concerns regarding how he will continue to be educated and we are now in multiple meetings with the school and therapists to try to figure out a plan. Ben’s mother, Carrie Falcone, was diagnosed with Lupus Feb 2016. The doctor’s believe it was able to express itself and came out due to extreme fatigue and stress. Carrie takes multiple disability days due to her own illness and to care for Benjamin. Benjamin’s father, John Falcone, left his job in NY and was doing substitute teaching to be available to help Carrie and Benjamin. Carrie was hospitalized 2016 due to the lupus and required removal of uterus and gall bladder due to the lupus and is also now dealing with a lesion on her liver. John bike rode which helped him deal with stress and he was struck by a van May 2017. John was very hands on and did all of the work around the home. In addition to the extreme burden of doctor’s bills, travel costs, loss of work and support at the home, it is very difficult for the family to continue to balance our mortgage, taxes, cars, utilities, and trying to give our kids a regular life. Ben and Jack both have behavioral concerns which we believe is due to all of the health challenges and we try to get them involved in cub scouts and other things and the costs also become very hard and we find we don’t do all things they may be able to get involved in like that or have to choose. Ben and Carrie both require gluten and dairy free and it has been recommended to eat organic as the disorders are autoimmune and diet is believed to be a huge factor on how bad the flare ups are. The grocery bills are also extraordinarily high due to the organic recommendation. We are doing all we can to keep both Ben and Carrie as healthy as possible especially as John is now dealing with chronic pain, multiple rods in his back and cannot help at home so much. John is now figuring out his own challenges and management of his pain which is now an additional burden.
Update, November, 2022:
Ben was diagnosed with Behcet's syndrome in April 2022, this has led to blister like sores on his body and increased joint pain that he deals with monthly. This syndrome is triggered by the Periodic Fever Syndrome, however usually expresses itself in early adulthood, his came at 9 years old. Keeping him positive, especially as he is now aware of his monthly symptoms and has lots of anxiety as we approach the end of each month is what we are trying to do. He always deals with the extreme fatigue and the neurological impacts of his diseases and its something that we try to help him out with. We try to find things to keep his fingers busy as he has a hard time controllig them at times due to his Tourettes syndrome. He also loves being cold which is also part of his condition and he loves to go iceskating. We can't express enough our gratitude for what you guys do and for everyone's support.