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Petitioning 8 year old need to see the specialist for Chiari Brain Malformation

Stop HMO insurance companies from denying necessary medical treatment


My 8 year old daughter Sarah was diagnosed with Chiari Type 1 Brain Malformation in May 2012. She had her first brain decompression surgery July 2012 in attempts to relieve the pressure on her brain and alleviate her symptoms in hopes of helping her lead a "normal" life. Her symptoms came back with a vengeance in September, just 2 short months after surgery. I have asked my insurance company to allow us to go the The Chiari Institute in Great Neck, New York and consult with specialists in the field. They have denied my pre-authorization request for the consult, stating that I should be "happy" they let me go out of network in the first place and have her first surgery at UCLA. Sarah used to have symptoms every 2 months, now she has them every day. She can't get through a day of 3rd grade without seeing the school nurse, needing medication or needing to come home due to headaches, stomach pains, nausea, or vomiting. The doctors at UCLA are stumped as to why her symptoms have returned, but the New York doctors have reviewed her MRI's and think they know the underlying problem. All I want is for the insurance to allow us to see the New York doctor, have him exam Sarah and run tests to check every aspect of her brain and the Chiari problems. From just seeing her MRI, the doctor in New York already feels that another surgery is needed to help her. Insurance will not approve even just the consult so we have decided to travel to New York and pay for whatever is needed out of pocket in attempts to get Sarah the help she needs. The actual surgery will be probably be over 100 K but we will make payments forever if it means relief for Sarah! If she does not get the relief, she will never lead a normal life. There is NO CURE for Chiari, but surgery is supposed to relieve symptoms. Sarah wants to be a brain surgeon and help people like herself, if she does not get the help she needs, she won't be able to make it through school, college, or ever hold a job if she can't get through a day without a headache that knocks her down for hours! Please help us get her to the Chiari Institute in New York. Help us change the health care system that allows the HMO insurance company to deny the needs of patients. These insurance companies should not be allowed to play God and decide what care a person gets! People deserve to have the best medical care for their issues, but insurance gets to decide what is best and most times it is mediocre care. I ask you to please sign our petition and help us show the insurance and the world that my daughter, and every individual deserves to find the best care possible for their medical needs! You can follow her story on Caring Bridge at http://www.caringbridge.org/visit/sarahbarnes1
We also have a fundraising page on Go Fund Me, located at http://www.gofundme.com/1bweu8
Thank you for taking the time to read our story and God Bless!!
ort this petition

Letter to
8 year old need to see the specialist for Chiari Brain Malformation
Stop HMO insurance companies from denying necessary medical treatment

My 8 year old daughter Sarah was diagnosed with Chiari Type 1 Brain Malformation in May 2012. She had her first brain decompression surgery July 2012 in attempts to relieve the pressure on her brain and alleviate her symptoms in hopes of helping her lead a "normal" life. Her symptoms came back with a vengeance in September, just 2 short months after surgery. I have asked my insurance company to allow us to go the The Chiari Institute in Great Neck, New York and consult with specialists in the field. They have denied my pre-authorization request for the consult, stating that I should be "happy" they let me go out of network in the first place and have her first surgery at UCLA. Sarah used to have symptoms every 2 months, now she has them every day. She can't get through a day of 3rd grade without seeing the school nurse, needing medication or needing to come home due to headaches, stomach pains, nausea, or vomiting. The doctors at UCLA are stumped as to why her symptoms have returned, but the New York doctors have reviewed her MRI's and think they know the underlying problem. All I want is for the insurance to allow us to see the New York doctor, have him exam Sarah and run tests to check every aspect of her brain and the Chiari problems. From just seeing her MRI, the doctor in New York already feels that another surgery is needed to help her. Insurance will not approve even just the consult so we have decided to travel to New York and pay for whatever is needed out of pocket in attempts to get Sarah the help she needs. The actual surgery will be probably be over 100 K but we will make payments forever if it means relief for Sarah! If she does not get the relief, she will never lead a normal life. There is NO CURE for Chiari, but surgery is supposed to relieve symptoms. Sarah wants to be a brain surgeon and help people like herself, if she does not get the help she needs, she won't be able to make it through school, college, or ever hold a job if she can't get through a day without a headache that knocks her down for hours! Please help us get her to the Chiari Institute in New York. Help us change the health care system that allows the HMO insurance company to deny the needs of patients. These insurance companies should not be allowed to play God and decide what care a person gets! People deserve to have the best medical care for their issues, but insurance gets to decide what is best and most times it is mediocre care. I ask you to please sign our petition and help us show the insurance and the world that my daughter, and every individual deserves to find the best care possible for their medical needs! You can follow her story on Caring Bridge at http://www.caringbridge.org/visit/sarahbarnes1
We also have a fundraising page on Go Fund Me, located at http://www.gofundme.com/1bweu8
Thank you for taking the time to read our story and God Bless!!
ort this petition