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06-08-06 Celina baby gets chance for normalcy

By Margie Wuebker
mwuebker@dailystandard.com

  Cole Matthew Etzler appears the picture of health -- rosy cheeks, an energetic desire to discover the world around him and an infectious smile he readily shares with visitors.



  But looks are deceiving when it comes to the 1112 -month-old Celina boy.

  Cole, the son of Mike and Nikki Etzler, suffers from a rare genetic disorder known in medical circles as Severe Combined Immuno Deficiency Syndrome (SCID). The condition has become known as "bubble boy disease" in the wake of a movie about a young man who lived for years inside a bubble because he had no immune system.

  The youngster, who has earned the affection of nurses and doctors at St. Marys, Dayton and now Children's Hospital in Cincinnati, underwent a bone marrow transplant early Tuesday morning. The anonymous donor has been identified as an educated young woman.

  No surgery was involved -- the life-giving cells were infused through an IV line as the youngster slept. The procedure took less than 30 minutes.  "Watching his new cells drip from this 'bag of life' into his body was so amazing," Mike Etzler says in a daily online update. "Knowing that someone who doesn't even know us had given so freely of themselves so our son may have a shot at new life, was so emotional it brought tears to my eyes."

  The Etzlers describe the procedure as a special time when they knew God was present. Now the waiting begins.

  Caregivers have warned it will take at least three months before tests reveal whether the production of immune cells has begun in Cole's blood. In the meantime, special medication will reduce the likelihood of rejection.

  Researchers know the younger the child, the greater the chance for a successful outcome.

  By the time Cole was diagnosed in April, he already had survived a serious virus and a life-threatening lung infection. Many advocate a simple blood test at birth that could reveal the disorder early on.

The diagnosis came as a surprise to the Etzler family. The dark-haired baby had not suffered so much as a sniffle between his June 22, 2005 birth and the November day when he was admitted to an area hospital with the respiratory virus.

A mother provides limited immunity to her offspring to fight off germs. An infant's immunity system kicks in around the age of 312 to 4 months. This is the point at which victims begin to show susceptibility to infections.

Statistics from the SCID Association indicate the disorder affects from one in 100,000 to one in 500,000 babies. The condition affects only boys.

  The Etzlers feel blessed to have a diagnosis and a promising treatment. Many families are not so lucky. Doctors have yet to find a reason why two Greenville sisters down the hall from Cole have no immunity, from an unknown source. They have undergone repeated bone marrow transplants.

  New strides in treatment have eliminated the need for life in a bubble. However, Cole's circle of family has been reduced in recent months to his parents and grandparents, Chuck and Cathy Etzler of Fort Recovery, and Dave and Kathy Taylor of Rockford, in order to limit exposure to germs.

  Doctors expect the Etzler family to remain in Cincinnati at least three months. Upon dismissal, Cole will join his parents in a hospital-owned apartment, which is designed to accommodate youngsters with SCID and other similar disorders.

  The relative isolation will continue for the coming year as immune cells continue to mount. Doctors will be able to differentiate between the boy's and those of the female donor.

  Mike Etzler, an elementary teacher at Crestview Local Schools and assistant volleyball coach at Celina High School, and Nikki Etzler, who is a teacher and head volleyball coach in the Celina school system, expect to miss many days of work during the recovery phase.

  They say they are overwhelmed by the support of fellow teachers who donated sick pay as well as churches, organizations and individuals who have stepped forward to help. Numerous benefits have been planned throughout the spring and summer as well as the future.

  "Although the future is uncertain, we know that Cole has a chance for a new life," Mike Etzler says. "We know that Cole has a chance at new life -- a gift beyond any gift, a chance at life, a miracle."

  -- In order to keep area residents updated on the youngster's condition, the Etzlers provide regular information on two Web sites: www.carepages.com/cincinnatichildrens and lovetocole.org.

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