East Central Students Bring Awareness to a Rare Disorder After an Untimely Death

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Wednesday, November 30, 2011

By Patrice Clark

A genetic disorder called Trisomy 18 is now on the minds of students and staff at East Central High School. The reason, Ryan Harvey and his wife's baby died two weeks ago of the genetic disorder which is caused by too many chromosomes.

Jackson County students honored their teacher and a life lost Tuesday.

A sea of blue and white balloons and more than 2,000 young faces filled the lawn at Hurley's East Central High School.

"This is very amazing," parents Ryan and Ashley Harvey said.

Ryan and Ashley were overwhelmed by the walk for Eli in honor of their baby boy. Five months into the pregnancy, the Harvey's learned their son was sick.

"He had a condition known as Trisomy 18. It is when there is a third chromosome in the 18 pair of chromosomes, so he had 27 instead of 26," Ryan said. "With the disorder, it is common to have heart conditions."

The baby was born November 16, but he lived just hours.

"It has been rough because like most parents, we were planning for where is he going to school, and where he was going to live. But then we changed our story to we just pray that we get to meet him," the family said.

This tragic story touched the hearts of some of Ryan's students.

"We started raising money, we sold t-shirts and we took donations and to fund this walk, and raise awareness of the disease," student Matt Balcer said.

They also made informational pamphlets that have been circulating around school and the walk. The pamphlets helped to explain the rare disorder.

"It is not known and you don't really hear about it," student Rebecca Hill said. "If something can be done about it, people need to know about it."

Organizers said they hope that each kid will walk away with a little more knowledge about Trisomy 18 and also the understanding that life is extremely precious.

"We handed a balloon to every high school student that came out of the high school. We asked them to blow up the balloon," Assistant Principal Sheree Nelson said. "We hope it represents that each balloon is filled energetic life that came from our school building in support of the celebration of life for Eli."

The students and staff raised $3,000 to support the family and raise awareness about disorder.

Copyright 2011 WLOX.

Source: WLOX

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