A five year old is living and even going to school with a birth defect called Prune Belly Syndrome. Trinity Williams, 5, is lucky to be alive with an estimated fatality rate at 30 percent for all prune belly babies.
If you walk into Trinity's kindergarten classroom at Oak Park Elementary School in Lake Charles you may not be able to tell him apart from the other students. If you look closer though you will notice a small stroller in the corner that he uses to scoot around and underneath his desk a round belly. For his mother, De'Andre Williams, Trinity is a miracle.
"I was devastated because they told me he might not live," said Williams about her pregnancy.
Doctors discovered Trinity's condition before he was born.
"Just for him to be born I was happy, but with mixed emotions happy and sad," said Williams.
Prune Belly Syndrome, which is exactly as it sounds. The baby's belly often is wrinkled up like a prune.
"He was a little wrinkled, but it has like lines in it," said Williams.
The wrinkled belly is just a side effect of a bigger internal problem with weak or under developed stomach muscles and urinary tract problems.
"The bladder is vertical instead of horizontal. He has a thick wall around it," said Williams.
This makes everyday constitutions for Trinity a big problem.
"He has to go to the bathroom like any other kid, but most of the time mom has to help him," said Williams.
On top of this Trinity has Chronic Kidney Disease, which weakens his growing bones causing them to bend.
"He's limited in what he can do. He struggles to walk right now," said Williams.
His kidneys are only getting worse and recently Trinity's doctor dropped a bomb: Trinity needs a kidney transplant. Without the transplant, Williams said, Trinity will need dialysis.
"The doctor wouldn't say its torture, but for a five year old kid it is not fun at all," said Williams about dialysis.
Even worse, Williams said, he could die without the clean blood kidneys provide for his body.
"If I could do it myself I would do it, but I'm not a match," said Williams.
Even as she struggles to take care of her son, she said it all melts all melts away when, "he says 'mama it's gonna be a good day.'"
Prune Belly Syndrome is a rare disease affecting 1 in every 40,000 babies, mostly boys, but for Williams that 1 is her little boy.
To contact the family call (337) 405-8919.
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