Erin's Metabolic Fund

Hi, my name is Lilly. I am the mother of a now 4 year old little guy, Erin. He has Familial Lipoprotein Lipase Deficiency. March 18, 2014 he was born, March 26th, 2014 we were at Wolfson Children's Hospital Emergency Department because Erin had a fever. At such a young age, 8 days, of course the doctors ran plenty of test to find out what was causing the fever. Overall Erin had meningitis, blood in and around his brain, and blood that came out looking as if he had a strawberry cream frosty swirling around inside of him. Literally, his blood had so much fat in itt, it was close to being a powdered pink colored. After more labs his levels of Triglycerides were 23,900 and his Cholesterol 1,000. Days later, we were required to go to UF Health Gainesville for a direct admit and that changed the rest of our lives. Two and a half days after our arrival we were told Erin likely has Familial Lipoprotein Lipase Deficiency (LPL - which is a rare genetic disorder in which a person lacks a protein needed to break down fat molecules. The disorder causes a large amount of fat to build up in the blood.) As a mother, I felt I was doing everything right. I breastfed him, had taken him to all appointments and did everything I was suppose to do. To have doctors telling me that my breast milk could further harm my child, that my little 13 day old baby could have a heart attack or stroke, and that for the rest of his life he has to be monitored and restricted on foods he may or may not have, was everything but easy. Though, to save his life I knew I had to do everything the specialist asked of me. The disorder affects about 1 out of 1,000,000 people. I was blessed with a "1 IN A MILLION" baby boy and I am thankful. Our Go Fund Me account is to help researchers find possible treatments, help with Erin's medical expenses and help fund travel to out of state specialist.