Fargo girl fighting battle with Prader Willi SyndromeFargo, ND (WDAY TV) - As a parent, you have all heard a child whine, "I am starved,” but imagine having a toddler that actually feels that way all the time.
By: Kevin Wallevand, WDAY
Fargo, ND (WDAY TV) - As a parent, you have all heard a child whine, "I am starved,” but imagine having a toddler that actually feels that way all the time.
A south Fargo family is preparing for an upcoming September walk to focus on a bizarre and heartbreaking syndrome that has deeply impacted their 4 year-old daughter.
Juliana Steffan loves her doll and her playground set in the backyard. This 4 year-old has an amazing family that supports her as she lives with a rare, sometimes bizarre condition called Prader Willi Syndrome.
April Steffan – Juliana’s Mom: “Their metabolism takes a dive, and then they have this uncontrollable hunger.”
It was diagnosed shortly after birth.
April Steffan: “It is their brain not ever understanding the feeling of full.”
What will be for Juliana, a lifetime of hunger. In some cases, those living with it have a constant feeling of feeling of being hungry. It’s a condition that sometimes forces families to take extreme measures to protect a loved one.
April Steffan: “The biggest challenge with Prader Willi is that they could just eat themselves into morbid obesity. Right now, adults with Prader Willi Syndrome have to live in a group home with their food locked up. They have locks on the fridge, cupboards, pantry; Everything.”
So few people have Prader Willi that the Steffans felt alone when their Juliana was diagnosed.
April Steffan: “We’re just really hopeful that things are moving in the right direction.”
They even made a video about living with Prader Willi. They’re also part of a national group of parents talking online, raising money for research.
April Steffan: “It is such a helpless feeling that there’s nothing we can do to change the course of it, but this research is something I can do.”
The syndrome also impacts muscle tone and motor skills. Juliana takes growth hormones and special supplements every day. It’s all in an effort to keep up with the challenges this syndrome presents. It is hoped the upcoming walk with education others here in the metro about Prader Willi and the battle waged to fight it.
The walk will be held September 7th in Lindenwood Park.