The Fight for Ashley
The Fight for Ashley
In early February 2017, Ashley was admitted to St Luke’s Hospital due to complications from Pneumonia. This made it difficult for Ashley to eat or breath on her own. During her hospital stay, it was unknown as to how, in her weakened state, Ashley would react to all this pressure on her system. Difficulties surmounted for Ashley and it became apparent to her loving parents, Craig and Nancy, that if she was to be released that her care would have to be increased to around the clock at home. Fortunately, in true Ashley form, she fought back. After a few very challenging touch and go weeks, she was discharged to her parents care at home with no feeding tube or oxygen.
Now that she is home, expenses will add up quickly. The Traumatic Brain Injury Waiver program does offer her some assistance, but now this falls far short of her current needs. At this point, as a result of her recent complication, Ashley’s independence has greatly decreased and the family is in need of increased outsourced assistance. For this reason we are reaching out to everyone that knows and Loves Ashley to ask for help in raising funds to help cover some of these expenses.
Ashley’s future is uncertain and our goal here is to be sure she has the best care possible, focusing on improving her condition and offering constant comfort. Thank you for joining in Ashley’s fight.
A little background on Ashley....
Ashley was diagnosed with Idiopathic Thrombocytopenic Purpura or ITP in 2005 and underwent a splenectomy. Shortly after she began to experience difficulty with basic tasks and was hospitalized at Rome Memorial Hospital. Testing at Rome Hospital was inconclusive so her family took her to Strong Memorial Hospital for a second opinion in 2008. Ashley spent some time in Boston for a neuro-psychological exam to determine the causes behind her diminished cognitive functioning. Her primary diagnosis was Hypoxic Encephoyleatus and secondary diagnose of ITP, which caused serious delays in her cognitive functioning related to mundane tasks. Ashley was unable to perform simple tasks on her own and required supervision and oversight at all times. In July 2013, Ashley lost 30 pounds even though she was eating. Ashley soon had skin breakdowns and her PCP suggested hospitalization for testing. Ashley’s parents and local physicians worked closely with her neurologist in Rochester, and it was determined that Ashley had a rare gene mutation in which she was not expected to recover. Ashley’s physicians sent her home with medications and directions for comfort care. At that time Ashley’s physicians agreed that she could be taken off her medications. At the advice of a family friend, Ashley was given mega doses of vitamins and essential oils. Within 3 months of holistic healing there was a significant improvement in Ashley’s health. Ashley started to gain weight, Ashley’s physical and cognitive stamina started to slightly return and she no longer required total assistance with toileting, personal care or ambulation. Ashley relearned how to climb stairs and her parents installed safety alarms to indicate when she was out of bed. At this time Ashley’s parents feel there are little options available to them medically because Ashley’s physicians are still baffled and cannot figure out the cause of her brain injury, nor a true diagnosis. Ashley’s doctors question her diagnosis because Ashley’s symptoms do not appear consistent with other patients diagnosed with Hypoxic Encephalitis or ITP. Her “real diagnosis remains a mystery.” Ashley continues to benefit from the DOH/TBI waiver program for Personal Care and oversight. The waiver staff are knowledgeable about Ashley’s traumatic brain injury and they allow Ashley to try to do as much for herself in all activities. HCSS staff and family members continue to work together on identifying strategies and routines that may work best for Ashley. Ashley’s support team are aware that even though a technique was successful one day, it might not work the following day. Our fight continues.