People often make rapid judgments after taking a quick look at someone they see in public. They ask themselves, “Can’t that mother control her kid?” when they witness a youngster having a tantrum. Or greet a little child who is unresponsive and presume, “Didn’t his mother teach him any manners?” However, that “unfriendly boy” is actually nonverbal, and the youngster throwing a fit was simply tired. The main idea is that people are engaged in struggles that are frequently invisible to us.
People had many preconceived notions about Ben Frietag, a 3-year-old kid from North Attleborough, Massachusetts, who weighed 100 pounds. The criticism was undoubtedly felt by his parents, Jonathan and Karen Frietag. In actuality, though, the family was having a terrible time dealing with their little son’s “bizarre” eating patterns.
Ben was always hungry. He was so hungry in fact, that when his parents tried to do right by him and limit his intake, he’d sit by the pantry and sob.
“It was heartbreaking,” Karen Freitag, told: “It was so hard watching him because you could just tell he was hungry, and he would just cry.”
By 2 years old, he weighed 65 pounds, by 3 he was at almost 100 pounds. It completely hindered his young life. He could not crawl, was too big for age-appropriate diapers, and generally lived in constant discomfort.
His parents set out on a quest to figure out exactly what was causing his insatiable hunger. After countless tests, bloodwork, and three endocrinologists, the doctors at Massachusetts General Hospital asked the family if they would be open to genetic testing related to obesity.
Doctors discovered that Ben was lacking in the hormone leptin, which controls appetite. A uncommon genetic disorder called LEPR deficiency basically “misfires” hunger cues, leaving those who have it constantly hungry.
“It essentially means that his brain thinks that his body is hungry,” Karen explained to the outlet. “So not only is it telling him he needs food and wants to eat, but it’s telling his body to retain the fat because his body thought it was starving. Regardless of whether we let him eat nonstop or didn’t let him eat, his body was going to retain the fat.”
Few people were aware of how to assist him because the illness is so uncommon. If the family was prepared to make the trek, a New York specialist at Columbia University who was working on a clinical trial of IMCIVREE for children ages 2 to 6 offered to get Ben on the trial. To keep the body and brain in sync, the medication aims to restore the hunger cues.
“Once he got on the medicine, probably within a week, it was like he was a normal kid,” his mother claimed. “All of a sudden, all of the food noise was gone, and he would play and not ask for snacks. And if we didn’t eat lunch on time, he wasn’t looking for food. It was a total 360 from where he was at before.”
Now at 6 years old, Ben takes a daily injection and it has utterly changed his life. The little boy is super active, and while he is maintaining that almost 100-pound weight, he’s much taller and the weight is evenly distributed. Food and thoughts of food are no long the all-consuming problem they once were, much to the relief of his family.
