Stevie was born September 22, 2005. Aside from the minor cold she was a healthy child until the age of 3 ½; when our whole world turned upside down. In April 2009 her body began to fight a tremendous battle. Her symptoms began with rapid weight gain, to the point we needed to replace her entire wardrobe. About one month after the weight gain we traveled to Yellowstone where she became very ill with some kind of flu bug. Upon this illness her personality changed dramatically ; she became very aggressive and very impulsive. She lost her ability to feel pain and has not cried since this time. Her ability to process sensory input became dysfunctional. We began meeting with many, many different specialists. She continued to baffle doctors until January 2010 when an endocrinologist felt she had a diagnosis. She diagnosed Stevie with ROHHAD which stands for Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation. Currently there are under 50 children worldwide fighting this syndrome. In a nutshell, the condition affects a part in the brain called the hypothalamus which controls much of your body’s functions including behavior, mood, GI abilities (which entails her entire gastric/stomach/intestine functions), breathing functions, hormonal balances, etc. The autonomic nervous system is also affected which controls your heart rate, temperature control, etc. The diagnosis is still not clear for Stevie, as she has had a severe rapid weight LOSS and is now being fed via a surgically placed IV in her chest to keep her body alive. She needs to be “hooked-up”, as we call it, to her nutrient fluids 20 hours a day. Since September of 2010 we have tried several ways to feed her fragile body. We have had many hospitalizations for IV line infections, severe dehydration and malnourishment, etc. etc. She is unable to keep any foods or liquids down at the present time and is now ‘feeling’ excessive pain in her abdomen because of it’s inability to work properly and digest food. The struggles on our family affect us emotionally, physically and financially every moment of our lives. Most of the treatment options for children with rare and unknown diseases are not covered by insurance because they are deemed ‘experimental’. We are also raising money to fund some respite care to give our phenomenal family support team and us a few hour break each week aka a “good night’s sleep”. Despite our tremendous up-hill battle we still have HOPE and we are grateful for every moment we share.