Organized by: Andrew Conley
Our daughter of 13 years is the strongest person we know. Having to deal with a host of medical setbacks that would have caused others to simply give up, Emily presses on. She loves school, horses, and music. All things come difficult to Emily as she does not always know or understand the appropriate way to react or respond in a given situation. Her neurological conditions cause physical symptoms. These symptoms can be in the form of pain, balance, or agility/coordination. Emily has an "invisible disability". Most people say to us that she looks great or that she is smiling a lot without knowing her true story or the hurt and struggle that she is dealing with inside. It took us 2 years to convince the medical field that something was not right with Emily. It took another 4 years since that initial diagnosis to find the right Dr. to run the appropriate tests and to prescribe the right medicine to actually start to help her. Today we find ourselves at what we have been told is the best that we may hope for in terms of our daughters health. There is no cure for her under developed brain, seizures, epilepsy, anxiety, depression, and Reflex Neurovascular Dystrophy (RND). Through the years of searching for answers and countless medical appointments our family has been literally tapped out financially. The only way we have survived this long is by the charitable contributions of family and friends. Today we find ourselves at our darkest hour, overlooking a cliff waiting on an angel to provide a miracle. A little over a month ago we made the decision to move Emily her two sisters and the family south to Florida. This decision was made to get better health care and provide more income as we continue to survive off one income so that one parent is always home to deal with the emergencies that will happen. Since this move Emily has regressed. While her seizure activity is better controlled, her RND and overall behavioral and social health have failed. She is withdrawn, in pain, and wants to go home to NY. In order to do that we need help. we have been told that a smaller community setting may be best. We also need to educate and re-educate those that we come into contact with about Emily's situation. We need to establish supports for community habilitation as well as home care to help teach her activities of daily living and personal hygiene. Your contributions will go directly to providing supports for Emily. We also need to continue to seek out medical care, testing, and advocacy services, as well as paying for her monthly medications. All of this is extremely expensive not to mention the toll that it takes on the rest of the family. We have tried and failed to get her approved for SSI and SSDI. We have tried and failed to get her approved for Medicaid. We have tried and failed to get her approved for grants and loans to assist with medical expenses. This is our last hope. We now know what we have to do for the rest of lives to assist our daughter and we gladly accept that. We are asking for help along the way.