Holly Williams, 25, from the United Kingdom, learned early on that her 5-year-old daughter Harlow has a rare condition that causes excessive hunger and weight gain. Since then, she has resorted to using a baby gate in her kitchen to keep her daughter out and prevent her from overeating.
“Having a baby gate on the kitchen door helps with making sure that Harlow isn’t getting into cupboards in the kitchen,” Williams told Caters News Agency, per the New York Post.
Harlow was 6 months old when she was diagnosed with Prader-Willi syndrome, a genetic disorder caused by either a missing or abnormal 15th chromosome, causing cognitive effects, problem behaviors, and chronic hunger, according to the Prader-Willi Syndrome Association.
Williams had no idea the rare disease existed before Harlow’s diagnosis.
Harlow had difficulty reaching certain milestones as an infant and toddler. For example, she couldn’t lift her head until she was around 8 months old and didn’t learn to walk until she was 2 1/2 years old. But according to the NY Post, the mother has taken the necessary steps to ensure her daughter remains healthy.
“She was really floppy, had no strength, didn’t cry and wouldn’t feed properly on a bottle,” her mom explained.
Those living with PWS have a “metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity,” the Prader-Willi Syndrome Association notes on its website.
Williams said she has to monitor how much her daughter eats.
“Harlow is overweight at the moment, so I have to be stern with her and tell her she can’t have any more to eat after she has had a meal,” Williams said. “I make sure she has a healthy and balanced diet, but she is still allowed treats, as she is just a child after all, so I don’t want to completely deprive her.”
Harlow currently attends a “mainstream” school, despite the various issues her condition causes. Williams said the 5-year-old also suffers from mobility issues, sleep apnea, and tantrums. But the mother-daughter duo maintains a close bond and spends most of their time together.
Williams may have to take additional measures in regard to Harlow’s eating in the future.
“In [the] future I will have to take further measures, and as Harlow gets older I will more than likely have to get locks for the kitchen,” Williams said. “It can be hard to deal with the conditions sometimes, but because Harlow is my first child, I don’t know any different,” she added.
Other children with Prader-Willi syndrome struggle to keep their weight within a healthy range. In 2016, the parents of 5-year-old Misael Caldogno Abreu feared the Brazilian boy could have died after he reached 178 pounds, according to the NY Post.
“Everything is so hard for him,” dad Manoel Abreu, 38, told Barcroft Media at the time. “He is a baby carrying an adult’s weight.”