Christians Cause

My son Christian has suffered since the day he was born. At just one month old he had liver failure because he couldn't swallow or keep any nutrients down.  At the age if 13 months he stopped growing which led his doctor to order an MRI.  Christian was then diagnosed with Chiari malformation. He had brain surgery at just 5 years old to relieve his symptoms. Though his headachrs had some relief, a plethora of other symptoms were starting to emerge. His symptoms are not limited to one body system but actually affects all. His symptoms are widespread and severe. He has headaches, heat and cold intolerance,  syncope,  sinus tachycardia, sinus bradycardia,  tremors,  daily vomiting, stomach pain,  burning pains in his hands and feet, febrile seizures,  insomnia,  severe exhaustion,  brain fog,  memory loss and toe walks. In cases of extreme stress his body reacts differently and will completely shut down.  It has taken over nine years and countless doctors over many states to finally have a medical diagnosis. Christian has Dysautonomia. Dysautonomia by definition is a malfunction of the autonomic nervous system . He has a team of specialists that range from Cardiology to Neurology and GI at Mass General Hospital who finally put all the symptoms together and made the diagnosis.  This is as far as they can go though.  Pediatric autonomic dysfunction is rare, so rare in fact there are only a handful of pediatric doctors who specialize in it.  After researching and scouring medical journals I came across Drs Gisella and Thomas Chelimsky, a husband and wife team at Milwaukee Children's Hospital who have made groundbreaking breakthroughs in pediatric dysautonomia.  Christians team at Mass General are all in agreement these are the specialists he HAS to see.  After careful review of Christians complete medical record the Chelimkys agreed to treat him and that he needs to be seen for further diagnosis and testing and to establish the appropriate plan of care.  These specialists get so many referrals they stopped taking new patients,  but Christians case is so extreme they deemed it absolutely necessary they treat him and provide him with the proper testing. These tests are not available in New England where we reside.  Christians insurance has denied this life saving treatment because it is out of network.  Milwaukee Children's Hospital is working with us and has reduced the cost as much as possible, but the out of pocket costs are still out of our financial reach.   PLEASE help my child get the treatment he so desperately needs and deserves.