Ashley, who is 23, has been tortured by excruciating, mysterious pain since she was a young girl 6 years to be exact. Doctors who have misdiagnosed, were baffled by or invalidated her misery. Unable to solve her dilemma, the medical community and insurance providers said it didn’t exist. You can’t blame them, entirely. Her condition is a little-known – but very, very real.
Ashley finally found a specialist Dr. Donald F. Feeney Chiropractor in Wilmington, DE who from a simple Xray of her skull and neck found the malformation. Dr. Feeney brought it to our attention and then we sought a specialist who could pronounce her diagnosis and told us what the next steps were and options were. Ashley has what is called Chiari Malformation, which is a serious neurological disorder affecting the skull and spine - and 300,000 people in the US alone have it. There is no absolute cure; patients with Chiari Malformation will be imprisoned by continuous pain as long as they live – the only available hope is a procedure called Foramen Magnum Decompression Surgery which can for some alleviate 70 to 80% of the ceaseless torment. Unfortunately for Ashley she fell in the percentile that it did not work. Three years later we are still pressing in, fighting with medical field to help with the pain she goes to sleep with and wakes with each morning. Ashley is hero in my eyes to just try to get up and function.
Those afflicted with Chiari Malformation miss out on a huge part of their personal and working time. Their quality of life is lower and definitely lonelier because of this. If they are fortunate enough to receive a proper diagnosis and are blessed to receive relief from Foramen Magnum Decompression Surgery and can have some what of a normal life. With much prayer, we are raising awareness and raising donations to help with aiding research on Chiari, and to try to help families that are put into a financial bind due to having being caregivers because a Chiarian is unable to work. Disability is a fight and to get Doctors to fill out paper work that is a book to be written in itself.
For more information click on this link https://www.youtube.com/embed/50nI45Qn878 it is very informative. Help us bring awareness and to help those who have this disability have hope again. Blessings and thank you for visiting us!