breaking news
A Wabash Valley boy has a deadly genetic disease that his parents want you to know about.
It`s a typical summer day at the Durcholz house in Brazil.
Annette and Chris` children are outside having the time of their lives.
And inside, the Make-A-Wish Foundation is measuring the bedroom of 4-year-old Ben.
The foundation is making a wish come true because Ben`s life will be cut short.
He has what`s known as MPS, or Mucopolysaccharidoses--A disease that 1 in 25,000 babies are born with.
"Ben`s body lacks an enzyme that breaks down waste products in his cells, and so over time the waste products build up and they cause progressive damage in his body," says Annette Durcholz, Ben`s Mother.
Enough damage to keep Ben from seeing his 21st birthday.
"They say that these kids will live until their teens, but that`s just really a guess, our child was only 11," she says.
The other child Annette speaks of was their son Zachary--he also had the deadly genetic disease.
"Chris and I are both carriers of this recessive gene. And the only way a child can have the disease is if both the parents have the disease," she says.
Some of the symptons of the disease are delayed speech, lack of hearing, hyperactivity and a constant runny nose.
Ben coughs a lot because of the lack of the enzyme. The mucas build up in his throat will eventually cost him his life.
"It`s generally something like respiratory failure or seizures or something that really causes them to pass away--I mean that`s really eventually what will wind up taking him," said Chris Durcholz, his father.
But the family isn`t scared for the future.
It`s a special day thanks to the Make-A-Wish-Foundation. In September, they`ll turn Ben`s room into the theme of his favorite restaurant--McDonald`s.
"It`s an environment, where, as he gets older, it will be something, as they get older they find less and less that`s readily familiar. It`ll be a really nice secure place for him--fun, simulating, for him to be in," says Chris.
FOR MORE INFORMATION:
www.mpssociety.org
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