See how family inspires Eli to live his best life.
As a child, Eli remembers doing the same things most boys his age do – fishing, hiking, and skiing.
But his parents knew something was different about Eli.
As a baby Eli’s mother discovered blood and an oily clear liquid in his stool. After speaking with their pediatrician they decided to do a blood test. Eli’s parents and the lab technician were mystified by the resulting amount of fat floating in Eli’s blood sample. Eli’s father remembers describing the blood sample as “looking like tomato soup.” This led to a cholesterol test that showed Eli’s triglyceride (TG) levels were close to 5,000 mg/dL. But none of his doctors had an answer as to why his TGs were so high.
After years of seeking help for Eli’s recurrent stomach pain, the family met Dr. Neufeld at Boston Children’s Hospital. After reviewing Eli’s blood draws, elevated TG levels, stomach pains, and recurring xanthomas, Dr. Neufeld immediately recognized Eli’s symptoms as FCS. Tests confirmed Dr. Neufeld’s diagnosis. Eli’s brother was also diagnosed with FCS around this same time.
Putting a name to Eli’s condition helped the family develop a low-fat nutrition plan to help keep both boys safe. Eli’s mother taught them how to prepare their own meals, as opposed to eating out. However, Eli’s parents were always fearful of the boys consuming too much fat and experiencing a life-threatening pancreatitis attack.
Eventually, Eli went off to college.
Eli understood that he couldn’t eat the same things his classmates could eat, like pizza and fast food, but his mother always worried about his eating too much fat.
Then after a night out with his friends, Eli’s parents received the call they had been dreading for 18 years.
Eli needed to be taken to the hospital due to a pancreatitis attack.
Watch Eli’s and his parent’s story here.
“Having it happen, those first three days he was in the hospital were terrifying. There was a point even where the doctor said that he might not make it. Part of his pancreas had actually become necrotic and it started to die.”
– Anne Marie
Eli’s mother
