Imagine always being hungry, but not being allowed to eat very much.  Now imagine that at six-years-old.  Freshman Aaliyah Caudillo doesn’t have to pretend– she lives that situation every day. Her little sister Love Harmon has Prader-Willi syndrome.  

Harmon, was born on November 3, 2014 with two collapsed lungs and didn’t cry right away. She was taken to the Omaha Children’s Hospital where multiple tests were run. Three months after being taken to the hospital Harmon was diagnosed with PWS.

According to the Mayo Clinic, Prader-Willi is a genetic disorder that causes chronic hunger, leads to obesity, shortness of stature, intellectual problems and sometimes behavior issues. 

Harmons mother, Chantella Nesslein explains the troubles of having a child with a rare syndrome. “It’s very difficult taking care of her at times, because she doesn’t talk very well and can’t be a regular six-year old.” said Nesslein.

Due to her syndrome, Harmon experiences different effects, including emotional ones. With PWS, “Love gets angry and throws tantrums when she can’t eat.” Says Nesslein

Caudillo said her sister is different and needs special care. “It’s not very easy helping my mom take care of a child, when she’s hungry all the time,” said Caudillo. “She has to be on a special diet so more vegetables.”

COVID can be harder on parents with children that have weaker immune systems, because it could cause them to pass away.

Prader-Willi syndrome causes fear in parents due to the lifespan of about 40 years of age or younger because of obesity. “They told me to be prepared for her to pass away, they didn’t think she would make it, because she had a lot of health issues,” said Nesslein.

While Harmon deals with health issues she doesn’t let that stop her from being happy. “She loves everybody that she meets,” said Caudillo.  

  Although Harmon can’t ever live alone or have children, her family will continue to take her syndrome day by day.