The Hungry Challenges of Prader-Willi Syndrome

Tayla Udall from Essex, England, is used to finding her four-year-old son rummaging through leftovers in the kitchen because of his rare disease of perpetual hunger.
Frankie suffers from Prader-Willi syndrome. This incurable illness causes him to lash out because of a chronic hunger that cannot be satisfied, no matter how much food he consumes. To learn more about Prader-Willi syndrome, click here.

Tayla has tried to limit his calorie intake to avoid his condition leading to obesity. By doing this, she gets the unsettling feeling that she is starving her own child, even though it’s best for him in the long run. People with PDS eat six times more than they should, but Tayla is trying to suppress this hunger as much as she can.

Frankie makes frequent trips to the kitchen to snack so Tayla has had to install a stair gate to block his entry. He also has to eat in a separate room from his brother so he doesn’t end up eating the food from his plate.

Frankie’s 21-year-old brother, Albie has posted videos online of Frankie screaming in hunger after his meals, in order to raise awareness for this devastating disease.

School has really helped Frankie understand the appropriate time to eat with its clockwork routine, eating with other children and regular serving sizes.

In addition to his lunch, Tayla packs Frankie two snacks for the day and makes sure to have dinner waiting for him at 4pm sharp in order to avoid a crying fit.

“He’ll go from totally fine to completely upset and hurting himself when he can’t have food,” said Tayla to the daily mail. “The fact I have to tell him he can’t have any more food breaks my heart. He does honestly think he’s starving.”

Aside from his difficult disease, Frankie is a happy and friendly child who makes friends easily and loves to play with others.

Tayla often reads the stories of other parents of Prader-Willi children and finds comfort in the fact that her family isn’t the only one experiencing the challenges of never-ending hunger.

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