Meet Cade!


 

On May 14th, 2010 Cade was born at 37 1/2 weeks weighing 5 lbs. 13 oz. He was taken to the NICU for observation due to minor respiratory problems and remained there for almost a month, 25 days to be exact. After 4 days of being in the NICU it was discovered that Cade did not just have minor repiratory problems...it was more than that. Several signs pointed to a chromosome abnomality. When Cade was 4 weeks old we got his diagnosis of Prader-Willi Syndrome. Cade's short life has been an ongoing struggle and he has faced many obstacles. Ranging from feeding struggles, obstuctive sleep apnea, silent aspiration, developmental delays...etc. We started therapy at about 6 weeks old...Physical, Occupational, and Speech. Since the age of 11 weeks old he has been on Growth Hormones, an injection every night. Aside from that, at 8 months old, I have this Amazing little guy who has taught my family and I so much about life. Cade has made great progress so far and we are determined that he will succeed at whatever he does. He has a smile that will melt your heart. Although it has been a struggle to get Cade to eat since birth, we know one day that we will have to stop him from eating. That is why we are raising money for the Foundation for Prader-Willi Research. We need to fund research projects so hopefully one day Cade and all others with PWS can feel full. You can continue to follow Cade's journey through our online blog.
 

Our Sweet Cade

Cade's Journey


One SMALL Step for Cade



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About Prader-Willi Syndrome...

 
Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity.

PWS was first described by Swiss doctors Andrea Prader, Alexis Labhart and Heinrich Willi in 1956 based on the clinical characteristics of nine children they examined.  The common characteristics defined in the initial report included small hands and feet, abnormal growth and body composition (small stature, very low lean body mass and early onset childhood obesity), hypotonia (weak muscles) at birth, insatiable hunger, extreme obesity and intellectual disability.

In recent years, the syndrome has been genetically characterized as an abnormality of chromosome 15, and definitive diagnosis is now based on genetic testing.
 

What are the symptoms of Prader-Willi syndrome?

The symptoms of Prader-Willi syndrome are thought to be caused by dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including hunger and satiety, temperature and pain regulation, fluid balance, puberty, emotions, and fertility. Although hypothalamic dysfunction is believed to lead to the symptoms of PWS, it is unclear how the genetic abnormality causes hypothalamic dysfunction.

There are two generally recognized stages of the symptoms associated with PWS:

Stage 1

In the first stage, infants with PWS are hypotonic or "floppy", with very low muscle tone. Weak cry and a poor suck reflex are typical. Babies with PWS usually are unable to breastfeed and frequently require tube feeding. These infants may suffer from "failure to thrive" if feeding difficulties are not carefully monitored and treated. As these children grow older, strength and muscle tone generally improve. Motor milestones are achieved, but are usually delayed.

Stage 2

An unregulated appetite characterizes the second stage of PWS. This stage most commonly begins between ages 2 and 6 years old. Individuals with PWS lack normal hunger and satiety cues. They usually are not able to control their food intake and will overeat if not closely monitored. Food seeking behaviors are very common. In addition, the metabolic rate of persons with PWS is lower than normal. Left untreated, the combination of these problems will lead to morbid obesity and its many complications.


Is there a cure for Prader-Willi syndrome?

Currently there is no cure for Prader-Willi syndrome, and most research to date has been targeted towards treating specific symptoms. For many individuals affected by the disorder, the elimination of some of the most difficult aspects of the syndrome, such as the insatiable appetite and obesity, would represent a significant improvement in quality of life and the ability to live independently. The Foundation for Prader-Willi Research is interested in advancing research toward understanding and treating specific aspects of the syndrome, with the goal of an eventual cure for PWS.

For more information you can visit-

www.fpwr.org

www.pwsausa.org


 

 
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