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Last Updated: Oct 16th, 2008 - 13:33:17 |
Gus was a chubby, adventurous 18-month-old who constantly wore a big, toothless grin. "Big Country," as his dad called him, liked picnics and play dates. He loved to play, he loved people, and he loved life. His own, however, was cut short. On May 30, 2003, his parents read him stories and put him to bed. He never woke up.
Gus was the son of Dr. Lunden MacDonald, Metro assistant professor of Spanish, and her husband. The coroner classified pneumonia as his cause of death. The MacDonalds, however, did not accept that decision and continued to search for answers. They consulted medical professionals from across the country and, after three autopsies, Gus' cause of death was classified as Sudden Unexplained Death in Childhood (SUDC).
"In 2003 there was very little information available about SUDC", MacDonald said. "It took four months to find information."
SUDC, a cousin to Sudden Infant Death Syndrome, is the sudden and unexpected death of a child who appears to be healthy. The difference between SUDC and SIDS is that SUDC affects children more than 12 months old. Cause of death is declared SUDC after all other causes have been ruled out. To do this, investigators examine the death scene, perform an autopsy and review the family's medical history.
Three months before Gus' death, Josh Gove, of Highlands Ranch, also died from SUDC.
The MacDonalds and Goves started to find help and answers from the SUDC Program, which is part of the CJ Foundation for SIDS. The program was pioneered by Laura Crandall, whose 15-month-old daughter, Maria, died of SUDC.
On Sept. 21, 2004, Lunden and Patrick MacDonald and Josh's parents hosted Josh and Gus' Run for a Reason, which has since become an annual event. The event was the second of its kind. The first was Max's Run for a Reason, which was held in Minneapolis in November 2003. Run for a Reason has caught on nationally, and there are now events held in other states, including California, Washington, Missouri, Illinois and Virginia.
MacDonald said the annual event has been a success from the beginning. It has done a great job of promoting awareness and raising money for the cause.
"It's not a happy subject, but it is a day of celebration for our children," she said.
Last year there were about 1,300 participants, and the event raised nearly $75,000. Altogether the event has raised over $200,000 for SUDC research. There is no government funding for SUDC research; all funding comes from money raised by family and friends.
"It's making me feel like Gus' life and death is making a difference," MacDonald said.
According to MacDonald, there have been nine reported cases of SUDC in Colorado in the past five years. Before Gus and Josh's deaths, no one in Colorado had heard of SUDC, MacDonald said. Now, because of the Run for a Reason events and the money they raise for research, information on the topic is much more readily available.
In 2004, in conjunction with Josh and Gus' Run for a Reason, MacDonald and Tami Gove gave a series of lectures to pediatricians, coroners, police officers and other first responders and medical professionals. In February 2007, John Franklyn Jr. of Aurora died. Because of the information learned at the lectures, the coroner, for the first time, classified the cause of death as SUDC.
On the day before the 2006 Josh and Gus' Run for a Reason, Bryn Dvorak of Parker died from SUDC. Her family was able to find immediate answers and support because of the work the MacDonald and Gove families have done in Colorado.
The first hypothesis for the cause of the syndrome appeared in an August 2007 paper written by pediatric neuropathologist Hannah Kinney and published by the CJ Foundation. For her hypothesis she studied five cases of SUDC. Each of the five children had hippocampal anomalies. The hippocampus is located in the temporal lobe of the brain. Humans have two hippocampi, which are supposed to be equal. The children who died from SUDC had unequal hippocampi.
"We propose that these five cases define a potential subset of SUDC whose sudden death is caused by an unwitnessed seizure arising during sleep in the anomalous hippocampus and producing cardiopulmonary arrest," her paper reads.
According to the study, possible precipitating factors include fever, infection and minor head trauma. Possible risk factors include a personal or family history of convulsions brought on by fever.
On Sunday, Sept. 21 the MacDonalds and Goves will host the fifth annual Josh and Gus' Run for a Reason at Clement Park, 7306 W. Bowles Ave. in Littleton. There will be a 5K run at 10 a.m. and a 2K fitness walk at 10:30. The event will also have children's activities, live music, food and a silent auction. To register for the event, make a donation or learn more about Josh, Gus and SUDC, visit www.joshandgus.com.
So far there are about 1,000 participants registered for the event, MacDonald said.
"It's important that the Metro community partake through philanthropic activities," MacDonald said. "It's important to get involved and do something, whether it be for this cause or another."
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