On January 30, 2012 (Owen's 2nd Birthday) Owen was diagnosed with Duchenne Muscular Dystrophy.
Lets back up some...
When Owen was 18 months, July 2011, our Pediatrician recommended we see a Pediatric Endocrinologist (Dr. Nguyen). The Endocrinologist discovered Owen's liver panel levels were above normal. Between colds, allergies, and sickness we tested and retested to see if the levels would drop back to normal. After four abnormal blood tests she referred us to a Pediatric Gastro-Interologist (Dr. Davis). We saw Dr. Davis in January 2011, and she requested one more blood test, which turned up elevated as well. She said she wasn't concerned about the liver, but rather the CPK level. She referred us to Dr. Curry, a Geneticist. We saw Dr. Curry Monday January 30, 2012 at 2:30pm. What happened next was a blur and shock, and we will never forget it.
We met with Jamie Fisher (MS) and her resident. They went over our family backgrounds, Aubrey's pregnancy, and Owen's birth. They met with Dr. Curry, and all three came back to talk with us. Dr. Curry proceeded to ask us if we had heard of Duchenne Muscular Dystrophy. At some point she told us that over time the child's muscles weaken, basically atrophy, and their heart does too. We did not understand however, that she was telling us Owen had Duchenne's. Dr. Curry is 99.9% sure it is Duchenne's. Aubrey asked when this would become "serious," and they said around age 3 or 4 Owen would display signs of tripping/stumbling, and trouble standing up from bedding over. She said he would most likely be in a wheel chair around age 12. Aaron asked what his life expectancy would be, and they said late teens. TEENS? REALLY? Aaron asked four times how they could be so sure (because Owen is above normal functioning for a child his age, they were impressed by his motor skills, language, and potty training capabilities, and is not showing any typical early signs of Duchenne's). They explained that in most cases it is a genetic disorder, and that the high CPK/CK levels indicate muscle damage or tissue damage (usually a type of MD). Owen's levels are 5,467 and normal are between 24-160. They could also tell by feeling his calves (pseudo hypertrophy). With tears welling up in all our eyes, we understood the severity of the diagnosis. They told us there is no cure, but finding out early will help us get into clinical trials and studies. They said our next step is to see Dr. "Hutch," the Neurologist. He will oversee Owen's treatment and management longterm. While we wait for the DNA biopsy results (at least 8 weeks for return) we will be praying, researching, learning, and working with Dr. Hutch. We left their office around 3:45pm in total shock. Because Owen physical appears to be healthy and normal we are still in disbelief. We are praying that by some Miracle or God's grace that the DNA biopsy will turn up negative, and that this will all be a HUGE mistake. However, in Owen's best interest we will be treating the situation as if they were 100% sure.
Hearing news like this turned our world upsidedown. Things that seemed important were no longer important. We started thinking of how we could spend the next few years soaking up life and living it to the fullest. We asked God so many questions, and went to our family and friends for support. We are leaning on our Savior Jesus Christ, because we know that He will get us through this storm. We are choosing to look at this trial as an opportunity to grow closer to God, our families, and each other. We believe God has chosen us to withstand this monstrous diagnosis because He believes in us. Our hearts are saddened, our minds confused, and "our plans"
forever changed. We do not understand WHY, but one day we will. We are praying for strength, knowledge for the Dr.'s, and miracles. This trial is BIG, but our God is BIGGER!
James 1:2-3,
"Consider it pure joy my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance."
James 1:12
"Blessed is the man who preservers under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him."
2 Thessalonians 3:3
"But the Lord is faithful, and he will strengthen and protect you from the evil one."
Philippians 4:13
"I can do everything through him who gives me strength."
*We will do our best to update you, please keep checking back!
*To find out more about Duchenne Muscular Dystrophy:
http://www.mda.org/disease/dmd.html
