SOULS MEDICAL EXPENSES

Soul-Angel is a 10 year old boy who has struggled with illness since the day he was born. Soul-Angel was born premature and was intubated at birth. He was in NICU for two weeks and sent home on oxygen for three months. Since then, he has been constantly sick. In June of 2011, it was discovered that his lungs were bleeding. Unfortunately none of the cells were testable due to severe inflammation but the following year they conducted the test and Soul-Angel came up positive for Hemosiderin-Laden Macrophages; this is indicitive of Idiopathic Pulmonary Hemosiderosis- a terminal disease with a life expectancy of about 5 years. Because this disease is so extremely rare doctors struggle with giving him this diagnosis. This disease is a disease of exclusion and over the last two years doctors have been trying to exlude every other possiblity...and now it has come to that point. Every other disease has been excluded with the exception of one possibility; Primary Ciliary Dyskinesia. Soul-Angel shows signs of this disease but not any of the "hallmarks". Both of these diseases are rare, one being extremely rare and terminal, the other causing life long suffering and damage within the lungs.

Soul-Angel's journey to diagnosis has been a struggle on the family. Soul-Angel's family has made tremendous sacrifices for the benefit of his health care. His mother lost her career from the inability to handle her own case loads and his health care, his family moved across the United States to live in a state known for better air quality in hopes to improve his quality of life. His parents often miss work and wages to take him to his appointments that are 5 hours away, and because his appointments are so far from home his family often needs to stay in hotels and occur additional travel expenses. The family has been unable to maintain a savings or even pay bills as anything extra goes to Soul's medical expenses.

Even through all the stress of doctors appointments, procedures, and various medical tests Soul continues to carry a positive attitude and brings a constant source of love and laughter to his family and loved ones.  His bravery is truly inspiring!  He never hesitates to tell you one of his favorite jokes or creative riddles! Thank you for taking the time to read Soul-Angel's story.