However, her journey was only beginning. This was just another piece of the puzzle. Her mom, Karalea, was determined to figure out the cause. She stumbled across the term dysautonomia and began to research it more. Because dysautonomia is so rarely known, Karalea began to search out a specialist who was familiar with dysautonomia. She took Amelia to a doctor in Toledo, Ohio. Within a year of her pacemaker placement, at 3.5 years old, she was diagnosed with dysautonomia and started taking her very first daily medication (a medication to help keep her blood pressure up and decrease her dizzy spells).
Over time, more and more problems were discovered and treated with various medications and therapies. In total, Amelia currently has a team of 4 specialists (Rheumatology, Gastroenterology, Neurology, and Cardiology), as well as a few amazing therapists (OT, PT, and VT) and of course her awesome pediatric NP. She has been seen by more than 10 specialists over her 7 years (including genetics to try to discover a root cause). She suffers daily joint pain, nerve pain due to small fiber neuropathy, dizziness, low muscle tone (including muscles that control her eyes and throat), hypermobility in her joints, and a very slow GI tract (gastroparesis). Her mother works hard to find natural solutions to help combat these problems, but at one point, Amelia was on 7 prescription medications (currently down to 3!!).
So, this is why we are raising money for Dysautonomia International. It is a terrible illness that sadly, just doesn’t have enough funding or awareness to even begin to find a cure! Dysautonomia International is out to change that and we can help!