Patient Stories of Hope and Inspiration 'MEET the KEAGAN!'

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Thursday, February 23, 2012

Our son Keagan was born healthy and happy at the 37 weeks on November 21, 2006 at 5 lbs., 12 oz, 18 inches long.

He was perfect and came home 24 hours later. He was completely different from his brother Sebastian and was sleeping a lot, gaining weight, and was doing really well. When Keagan was about 6 months old, he stopped gaining weight, and he had very bad reflux. At 9 months old, in August of 2007, he had a nasal feeding tube placed and weighed only 11 lbs., 8 oz. They found out that his liver enzymes were high and so were his lactic acid levels. A geneticist did some tests and found out that he had 3-Methylglutaconic acid in his blood and diagnosed him with a metabolic genetic disorder. In September 2007, Keagan went back to the hospital for a fundoplication and a g-tube placement. During the surgery he mysteriously coded and they brought him back. Afterwards, they discovered that he needed a blood transfusion and other than that he was fine, so we took him home.

He then started to see his geneticist, and we found out in November that he had Mitochondrial defect with Methylglutaconic Aciduria. They were not able to tell us much about what problems he would have, or if they would ever be able to isolate the gene causing the problem. There isn’t testing for what they were looking for and the testing is so expensive that medical insurance does not cover it. We were warned that it could take several months to investigate, and we could wind up with no answers at the end. He was doing great, smiled, and laughed. He was able to stand by holding on to stuff and he could sit up. Everything seemed okay.

On January 8th, 2008, Keagan was doing fine. He sounded like he might be coming down with a cold; however, he wasn't running a fever or acting too differently from normal. My husband came home, and around 6:00 P.M. he fed him and put him down to sleep. He woke up around 8:00 and was having problems breathing, and his lips were blue. So I rushed him to the hospital, where they discovered that his blood sugar was 700. This was odd, because in this type of disorder the blood sugar is usually low. They put him on a respirator, and that was the last time I saw my baby awake. His heart stopped when they were inserting the breathing tube. They were able to resuscitate him; however, from that point on everything started to shut down, and Keagan passed away around 9:20 January 9th 2008, due to total organ failure because of complications of a Mitochondrial disorder.

Crystal Fife
Ontario, Canada

Source: The Global Genes Project

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