Our Story

{Kari} a.k.a "Mom" -
 I grew up fairly healthy.  I can look back now and see several "red flags" throughout my childhood.   I used to get frequent sharp chest pains and heart racing episodes that took me to the doctor/hospital several times but was always dismissed as "growing pains".   Additionally, I have dealt with severe flushing my entire life.  My chest and face will break out in red blotches and hot flushing often.  I always thought that "black outs" upon standing were normal.   I also remember several times when I would get extremely cold and shake/shiver for no reason.   Early in my 20's my cardiac symptoms worsened and I went to several cardiologists but they could never find a cause to my symptoms.  In my mid 20's I struggled through my 2nd pregnancy with constant tachycardia and developed SVT (Super Ventricular Tachycardia).  I was even rushed to the hospital at 32 weeks pregnant with a heart rate of 210 while laying down.  I also struggled with extreme fatigue during this time.  After my 2nd child was born, I continued to struggle and was sent to a cardiac specialist who administered a table tilt test and diagnosed me with P.O.T.S. (Postural Orthostatic Tachycardia Syndrome).  All of my symptoms finally made sense!!!  I was put on a couple of medications and instructed to drink LOTS of fluids and increase my salt intake.  As time went on I began developing other symptoms such as intense itching, extreme fatigue, exercise intolerance, dizziness, nausea, memory fog, etc.  Even though I had been diagnosed with POTS in 2003, I did not understand just how much this dysautonomia was affecting me.   Recently, my daughter, Hannah was diagnosed with dysautonomia/POTS and through my research and finally finding a great doctor, I have come to understand just I little I truly understood about my condition.  It is truly a chronic illness with many facets that need to be managed.  I pray that we  "Stand Tall" as we walk together through the journey and challenges of dysautonomia.

{Hannah}
Hannah was born as a healthy full term beautiful baby girl.  We can recall that even as a newborn, Hannah's legs turned purple when we held her.   We now know that to be blood pooling but at the time we just noted it as odd.  By 9 months old we noticed that she was not meeting some motor milestones (ie. crawling, rolling, etc)  That sent us down a long road of seeing specialists of all kinds to try to determine what was causing her hypotonia (low muscle tone) and delays.  She began physical therapy, occupational therapy and speech therapy at 9 months and continued them through 3rd grade.   She met all of her milestones, just significantly delayed.  She was also diagnosed with Sensory Integration Disorder, Apraxia, & Hip Dysplasia.  She had surgeries to repair her right hip and right foot/ankle at 6 and 7 years old. She has also had two muscle biopsies to try to determine the cause of her muscle weakness/imbalance.  She was diagnosed as having an "unspecified muscle myopathy" from these biopsies.  In other words, they found abnormalities in her muscle tissue but they have not been able to give her muscle disease a specific name.  Hannah has always had to try twice as hard to accomplish things that come naturally to most of us.  Her endurance is low but her determination is high.  As Hannah entered her teen years we noticed more symptoms emerged such as "brain-fog", heat intoleranace, and difficulty functioning many mornings.  Her legs and hands show obvious blood pooling upon standing as her heart rate increases dramatically.  Hannah has difficulty maintaining her blood pressure.  Sometimes it is dramatically low causing pre-synocope, dizzyness and weakness.  Sometimes it was been high with an overall feeling of nausea and headache.  Recently, Hannah was officially diagnosed with Dysautonomia/POTS by a pediatric electrophysiologist at Johns Hopkins Hospital.  Hannah appears to be more dramatically affected by dysautonomia due to her co-exisiting muscle disorder and being a teenage girl in the throws of growth spurts and puberty.