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M Rob's Fundraiser:

For Jeffrox

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M Rob


On one Friday the 13th, my little brother Jeffrey was born. I truly considered him MY property because I was 6 years old and I had been the one to name him. I didn't understand what was going on when he was born prematurely. I didn't get it until I was probably 9 or 10. My mother used the word "special needs". Some family members used the word "slow". What I still didn't know was that Jeffrey had Prader-Willi Syndrome.

Prader-Willi Syndrome is a genetic disorder. It is the most common genetic cause of life-threatening obesity in children. At birth, these children have low muscle tone which can cause feeding difficulties due to poor muscle tone affecting the sucking reflex. It results in a diagnosis called Failure to Thrive. In childhood, the hyperphagia sets in. Hyperphagia is an extreme unsatisfied drive to consume food. Prader-Willi Syndrome affects the normal functioning of the hypothalamus, which controls appetite. Individuals with PWS are at risk of learning and attention difficulties. Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some behavior problems and unique medical issues. There is no cure for PWS. Many physicians are recommending prescriptions of daily growth hormones which may help to combat the food preoccupation and weight gain.

It has been 10 years since I've lost my brother. You cannot die of Prader-Willi Syndrome. He died of complications due to the PWS. Even when he died, I never fully understood this disorder. Not a day goes by when I don't think of Jeffrey, who was affectionately called Jeffrox by many family members. I now want to devote more time in learning about PWS.

To learn more about PWS, please go to



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