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Turlock family seeks to raise awareness about rare syndrome

Turlock family seeks to raise awareness about rare syndrome

Jose and Carolina Alfaro take a family trip to the pumpkin patch in 2008 with their oldest son Jose (middle) and sons Diego (far right) and Adrian (left). Both Diego and Adrian were diagnosed with ...


POSTED August 30, 2013 10:32 p.m.

When Jose and Carolina Alfaro decided to expand their family in 2006 and give their son Jose a new brother or sister, it should have been a happy time in their lives.

But that happiness soon turned to tragedy. Not once, but twice.

“My husband and I were blessed to have our first child born healthy and wonderful,” said  Carolina Alfaro. “When Jose was almost a year old I became pregnant for the second time and everything seemed perfect. There were no complications. We did all the necessary tests that had to be done during a pregnancy and everything appeared to be normal.”

Life took an unexpected turn for the Alfaro family when Diego made his way into the world. With low lines underneath his eyes and an abnormal sized forehead, doctors were unable to determine a proper diagnosis for the newborn. The Alfaros were left with more questions than answers.

“The doctors immediately noticed Diego had some facial features that lead us to believe that he was a Down syndrome baby,” said Alfaro.  “On top of that, he didn’t want to eat. When we heard the words 'Down syndrome,' I thought it would be the end of the world for me and my family. Little did we know that his symptoms and condition were much more severe.”

Unable to determine a cause for Diego’s condition, the Alfaros were in and out of the hospital for months for test after test.

“They ran a multitude of tests and procedures to try and find out what his condition was,” said Alfaro. “There were no answers. Everyone thought he had a gastrointestinal related disorder. He also had to get intestinal surgeries within months of his birth. We were later then referred to the University of San Francisco Children’s Hospital, and after running some neurology tests, we finally were able to find out his condition.”

Diego was diagnosed with Zellweger syndrome, a rare congenital disorder. It is characterized by the reduction or absence of cell structures that rid the body of toxic substances in the cells of the liver, kidneys, and brain. Children with Zellweger syndrome live typically about a year.

“My heart dropped. Our tears came flowing,” said Alfaro. “As we saw Diego next to us and we were holding him I wished at that moment to hear the words Down syndrome instead.”

The doctor also told the Alfaros that if they had more children in the future, they  would have a higher chance of those children also having Zellweger's. Carolina’s heart dropped when she heard what the doctor said, because she was already three months pregnant with her third child.

“There was a one in four chance my third child would be affected with this syndrome, but I took my chances,” said Alfaro. “Sure enough, once Adrian was born we had him tested immediately and the tests came back positive. He was also affected.”

Diego and Adrian defied doctors' expectations and lived past their first year. Diego passed away at 2 and a half years and Adrian lived to the age of 3.

“During their short years of life we were able to really get into their lives and find out the best care we could give them during the time we had them,” said Alfaro. “My children couldn’t  do the normal functions that normal developed child could do. Their development was really slow. It affected their mental, physical abilities, and nervous system.”

With the help of other parents whose children also suffer from Zellweger's, the Alfaros formed the Global Foundation for Peroxisomal Disorder.

“To keep their memories alive, my husband and I decided to make it our mission to help the lives of other children affected by this disorder and show our support to their families on this difficult journey,” said Alfaro.

 Last year, the Alfaros put together their first GFPD Dinner Dance fundraiser and raised over $15,000 through the generosity of sponsors and the community. This year, the Alfaros are hoping to raise even more funds at their second annual Dinner Dance Fundraiser, set for 6 p.m. Oct. 5 at the Denair Community Center. The dance will feature a special performance from the Mike Torres Band at 8 p.m.  A silent auction will also be held.

“The main purpose for this fundraiser is to raise awareness,” said Alfaro. “So many children go undiagnosed because this syndrome is very rare. Doctors don’t even know what it is. This fundraiser also helps tremendously for research. We have top of the line doctors and researchers who are committed to this cause and are trying to find ways to prolong the lives of these children who have this disorder.”

To purchase tickets or for information on sponsoring the event, visit www.diegoandadrian.com or call 535-8718.

 

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