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October 15, 2012

Disorder doesn’t slow family

LAUREL COUNTY, Ky. — Without warning, Tara and Mikayla Deaton could lose their lives on the volleyball court at South Laurel High, the culprit--a rare genetic mutation called Brugada Syndrome.  

The two are just two out of six of their family members who have tested positive for the hard to diagnose syndrome.  The girl’s father Chris Deaton, came face to face with Brugada when his brother Anthony Deaton, unexpectedly passed away at 23 in his sleep. It’s a genetic disease with no cure, a very sparse heart disorder.   Each year in the U.S. approximately 295,000 Americans die suddenly due to cardiac arrhythmias.  Almost 4,000 of them are young people under the age of 35.

“As a precaution, my siblings and I underwent annual cardiology testing with no indication of an issue.  Then, while on a flight in 1998, I slipped in and out of consciousness and narrowly survived what was later described by cardiologists as a near-death cardiac experience,” Deaton said.

The sudden episode drove him to make the decision to receive a defibrillator implant.  An implant is the only solution for those with Brugada.  Following the invasive surgery and a month after his brother lost his life, his daughter Tara was born in May of 1995.  Deaton and his wife, Cynthia, were concerned about the health of Tara’s pint-sized heart.  According to the Sudden Arrhythmia Death Syndromes Foundation (SADS), each child of an affected parent has a 50 percent chance of inheriting the condition.  Other names for Brugada Syndrome is the sudden unexplained death syndrome or SUDS.

“She (Tara) was thoroughly tested each and every year, as was each of our subsequent children,” Deaton said.

Each year the couple would take all five children to be tested, and each year they were told with confidence that they showed no evidence of a Brugada symptom.”So we were guardedly optimistic that no problem existed.  This soon proved to be misguided optimism,” Deaton added.

In 2007, an alarming breakthrough occurred--Tara unexpectedly fainted while getting ready for the day, brushing her hair.  The couple knew instantly that a concealed heart issue was the culprit.  Tara was referred to a pediatric cardiologist, Dr. Jorge McCormick, known for handling very unusual cardiac issues, and took a great interest in the family.

“Each child was then genetically tested and it was discovered that four of our five children--all our girls, as fate would have it--carried the mutation for Brugada Syndrome,” Deaton said.

His second oldest, Jacob, fortunately does not carry the gene.  Deaton’s mother Judy was also tested at the time, and it was confirmed that she was the carrier of the genetic mutation.

“So, finally, 12 years after the death of my brother, we had our answer and knew what we were up against,” Deaton said.

His oldest daughter Tara not only would have to worry about her heart health in the classroom, but on the sidelines or ball court as a South Laurel High cheerleader and volleyball player.  She was the first of her siblings to receive a defibrillator and after surgery she bravely returned to the volleyball court--fearless.  “You can’t let your heart rate get too high or else it will shock you, and I push myself pretty hard.  I don’t let it define me, that’s the biggest thing,” Tara said.

“She knows she could effectively die at any moment without warning, but through sheer guts and determination she has not let her condition or the defibrillator keep her from playing the sport she loves so dearly,” Deaton said.  “Her decision to not let her condition become a crutch has filtered to Mikayla.”

Tara’s modeled determination inspired her younger sisters to follow in her footsteps.  Camryn at 10-years-old has begun her sports career as well, and made the Cold Hill Elementary basketball team.  She is scheduled to receive her defibrillator next year.  The youngest daughter, Emma, at eight-years-old will need an implant in four years according to medical professionals.  In the future, all four of their girls will have the syndrome weighing heavily upon them as they begin to have families of their own, because they are carriers of Burgada and their children will each have a 50 percent chance of having that same mutated gene.

Recently, a new defibrillator has been approved by the Food and Drug Administration (FDA), which will involve a less invasive procedure than ever before.  Deaton is hopeful that perhaps, his little one will be able to have an easier experience than the rest.  No matter where the family goes they always tote around a portable AED defibrillator as a second defense in sustaining their fragile, yet optimistic lives.

“It has been quite the road,” Deaton said, adding, “it’s definitely been a family thing, for better or for worse.”For more information about Burgata Syndrome visit www.sads.org.

mmccrarey@sentinel-echo.com

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