Our journey has taken an unexpected turn as Haylee was diagnosed with a very rare disease called "Paraganglioma"* which appears to have metastasized. We appreciate and are humbled by the love and care everyone has shown us, as we realize that we are not alone but are being supported and held up in prayers and thoughts of all those around us!
*From the Department of Surgery at Columbia University: Paragangliomas are rare tumors that make too much adrenaline. Paraganglioma are found in 2 out of every million people each year and is the cause of high blood pressure in less than 0.2% of people with high blood pressure. However, because paraganglioma release adrenaline in uncontrolled bursts, they can cause serious health problems like stroke, heart attacks, and even death. For this reason, many doctors call it the "pharmacologic time bomb." Paraganglioma can occur at any age and there are no known risk factors except for certain genetic syndromes. Up to 25% of paragangliomas are inherited."
https://columbiasurgery.org/conditions-and-treatments/paraganglioma 
