I am a 37year old native New Yorker. I was in the United States Army National Guard and I am also a retired New York City Police Officer. Currently, I work for a local florist. My wife, Melanie, is a 36year old native New Yorker. She is a Registered Nurse and is employed by New York City Health and Hospitals Corporation. She is a staff nurse in a local city clinic operated by Coney Island Hospital (a division of NYCHHC). We were married in 2001. We tried numerous times throughout our marriage to conceive, but were unsuccessful. Finally, we were blessed with our twin boys, Kyle & Aidan, on May 02, 2008. That was the happiest day of our lives, but unfortunately our joy turned to devastation8 days later.
About Kyle Colamaria:
Kyle was born on May 02, 2008 and was immediately placed in the NICU (Neonatal Intensive Care Unit) with an oral feeding tube. Kyle remained in the unit for approximately 36hours. After three days in the hospital, Kyle and his fraternal twin Aidan were able to come home with my wife and I. All newborn babies lack the strength to move, however Kyle was completely motionless.On May 11, 2008, we received a call form the pediatrician and Mount SInai Medical Center's Metabolic Clinic stating Kyle's Newborn Screening came back positive for a Metabolic Disorder. We were told to bring him to Mount Sinai immediately for retesting. The results were devastating, Kyle was confirmed with a diagnosis of Methylmalonic Acidemia with Homocystinurea (aka: CobalaminC deficiency; MMA + HCU). Metabolic Diseases are generally rare, however, Kyle was diagnosed with one of the more rare diseases. He has 2 genetic mutations in which he is missing an essential enzyme necessary to break down protein in his body. The proteins build up and turn into toxic substances that he cannot breakdown and eliminate from the body. Kyle is on a restricted protein diet, he cannot ingest meat, fish, poultry, dairy, tofu, etc.. He is on 5 different medications daily consisting of 1 injectable and 4 oral. He is evaluated at Mount Sinai biweekly(recently biweekly, it was 1-2 times per week in the beginning), he has blood drawn at each visit to monitor his blood levels for amino acids, and basic chemistry's. Some of the side effects of CobalaminC (MMA+HCU) are retinal/optic nerve degeneration, Neurological disorders such as seizures, fatigue, learning & developmental delays, Mental retardation, major organ failure (Heart, liver, kidney, pancreas), psychosis, a metabolic crisis could occur causing coma and possible death. New born screening is not available nationally, and not every state that offers it has an expanded newborn screening, which is the screening that picks up metabolic disease. It is now thought that many of the cases of SIDS and cardiac arrest in babies can be attributed to metabolic disease such ad MMA +HCU. There is no cure for this disease, nor is there enough information available to medical professionals or general population about it. A simple flu or virus can be fatal for those with CobalaminC(MMA+HCU) if the blood levels of proteins are not stabilized immediately. Most hospitals are unaware of how to treat these patients and Mt Sinai must be notified immediately if Kyle gets sick, regardless of the severity of illness.
About our struggles with Government assistance:
Upon Kyle's diagnosis, we had to purchase all of his medications. The total cost of Kyle's medications are approximately $1600.00/month. GHI & PBA (Caremark) were refusing to cover any of Kyle's medical expenses. We had to purchase his medications out of pocket and quickly maxed out all of our credit cards in the process. We applied for Social Security Disability/Medicare on May 29, 2008 and were denies on July 08, 2008. The reason for denial, according to Social Security was that our combined gross income exceeds $3800.00 per month. We applied for Medicaid in May of 2008 and were denied because our income exceeds $2200.00 per month. My wife was told "If you sign a waiver refusing medical attention for Kyle, then maybe medicaid can help". Needless to say we would never sign such an obsurd document and were highly insulted that a government representative would say such a thing.We reached out to the NYC Department of Health Insurance Division and they were no help either. Renne King, a DOH employee, actually asked my wife "what would you do if your husband jumped off a bridge, how would you care for your child". The bills kept increasing and we have fallen behind on all of our household bills. Our credit is destroyed and we will soon be in danger of losing our house. Kyle cannot live without his medications. We need some assistance immediately or we will lose everything.
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