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Mom raising awareness after having to lock food from baby

2.7 from 7 votes
Thursday, February 11, 2010

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Dealing with the everyday stresses of raising a family is hard enough, but what if you're trying to raise a child who feels like they're starving each and every moment of the day.

The rare condition is one that a Laredo mother wants everyone to know about. Many people have never even heard of Prader-Willi syndrome, including Rosie Gonzalez who admits she first learned of the disorder three years ago. She says that's when life would change forever. Life for Christopher Gonzalez will never be easy. Almost three years old and he already has an extremely strict diet. His mother Rosie was told Christopher may not live past the age of 20.

“We wish they could grow up and go to college and get married and be independent but they're always gonna be dependent on us the family.” Christopher has Prader-Willi syndrome, a genetic disorder that affects an average of one in 15-thousand children .... and causes a chronic feeling of hunger .. paired with a metabolism that utilizes drastically fewer calories than normal.

Christopher will demand to eat any food in sight. Many children will eat themselves to death.

"They can gain as much as 6 pounds in less than a month. It breaks our hearts that they’re always wanting to eat but we know they're not hungry because they just ate. But its just something in their brain they cannot control something that says I’m starving,” she says. Trips to the grocery store are out of the question. "Its just too much for him overwhelming to see the food."

The entire family has to keep a very close watch on what foods lying around the house and have turned to locking the refrigerator door just in case.

“Later on we're gonna have to lock cabinets because he's gonna grow taller."

"Its a chromosomal defect that kids can inherit typically from the fathers side."

Dr. Roberto Villegas, Christopher's pediatrician, says children like him will live a life with many medical complications and there is no cure. "There are different treatments that tend to make things a little less problematic, growth hormones things for obstructive apnea but it doesn’t just go away.”

Gonzales meanwhile says she's wishing for a miracle and has turned to other families who know how she feels.

Like the moms of 5-year-old Joey and six year old Rey, who also have PWS. She hopes to create a support group to help families who have been drained of their options but not their love. “Support each other and help our children live a longer healthier life … its a lot of work but we're doing the very best that we can to help our kids.”

Gonzalez hopes her son will be able to attend public school but since many children have behavioral disorders associated with PWS, Chris may have to be home-schooled. Either way she hopes families will become more aware about Prader-Willi syndrome and come forward in search of support. Gonzales says it’s the best thing to do in such a tough situation.

 

©2008 KGNS-TV

Source: Pro8News.com
2.7 from 7 votes
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