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Living With Prader-Willi Syndrome - Valley News Live - KVLY/KXJB - Fargo/Grand Forks

Living With Prader-Willi Syndrome

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One in every 15,000 kids are diagnosed with Prader-Willi Syndrome a disease that affects many parts of the body, but is most commonly known for causing a feeling of hunger.

Last week awareness was raised for rare disease day, but one Minnesota family experiences the struggles this syndrome brings everyday.

Valley News Team's Kristi Larson shares the challenges the Engles/Redzanic family has had to overcome to keep their daughter safe.

"We had gotten the conformation that she had been tested for Prader-Willi syndrome, I cried." says Sam Redzanic, "And then I think as I cried I had to morn the loss of the baby I thought I'd have."

Sam Redzanic now watches her 7 year old daughter, Addy, play the role of a mother with her baby dolls. Doctors had once said she wouldn't be able to walk or want to hug anyone, but Sam has watched Addy grow past expectations, and is amazed at the strides she has taken.

"We had to re-plan our life, and learn about her," Sam explains, "and she has done everything above and beyond what we could ever imagine as far as having a Prader-Willi child."

But there are still everyday struggles like keeping the kitchen locked along with the fridge and cupboards.

"If she does get into something and I don't lock my cupboards she's going to burst her stomach and I'm going to find my daughter somewhere where I don't want to." Sam says with worry in her eyes.

Prader-Willi not only affects Addy's muscle tone, but she has the feeling of always being hungry.

"I call it cookie monster." Addy explains it.

But as Sam explains it isn't like what other people feel.

"You know when you are full. You get that satisfaction at the end of a Thanksgiving meal when you are overly stuffed and think you are doing to burst and you can stop yourself, but this little girl can't." Sam exclaims, "She's going to die if she eats that much and can't feel."

Addy's diet is portioned out, but this 7 year old doesn't let her 'Cookie Monster' or anything else get in her way of being the happy girl she is.

"Addyson can walk, she can talk, she can run, she loves to sing." Sam says with a smile.

All these things Addy is doing gives Sam a feeling that she has a bright future ahead of her.

The family says they've met other parents in the Red River Valley with children who also have Prader-Willi Syndrome and they support each other.

If you want to know more about the rare disease just click here.
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