DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between ages 3 and 5. The disease primarily affects boys, but in rare cases it can affect girls.
Monday, March 11, 2013
New Comers
I have had a great deal of traffic on my blog. I haven't kept up with it as much as I should but a mom of three its hard and I started school a few months back so that is also taking my extra hours of my day. Many have messaged me on here and on facebook to give us their thoughts and prayers. Some don't know about Aidan's story. Even though it's on the first page I would like to give his story again to the new people so they do not have to search for it. Aidan was born on Oct 2009. He did not have the greatest birth experience I guess you would say. I am not Aidan's birth mother. She had some troubles and she had issues with drugs. She did use them through her pregnancy but we were glad that when he was born he did not have it in his system and he did not express any withdraws. He weighed 4 lbs when he was born but he was already a fighter coming out. He didn't need any oxygen or anything. He was released in the care of the maternal grandmother. Make long story short when Aidan was 5 months old I had the opportunity to care for Aidan. We thought it would be temporary but in September 2010 we got fully custody of Aidan. Aidan had many delays and we just thought he would be okay. Starting in March 2011 everything changed for our family. Aidan had a very high fever and we took him to the doctor. We just thought he might have a virus or something. He got a shot of antibiotics and prescriptions and was sent home. I laid him down for a nap. For some reason I had this thought to go check on him. I walked into his room and in his crib he was seizing (did not know this at the time though). Called 911 took a ride to the hospital. They told me it was a febrile seizure. They gave him some iv fluids and antibiotics. He started to look and feel better so they sent us home. He started to throw up. Stephen and me woke up every three hours to give him medicine. He started throwing up and keeping no medicine down. Around noon the next day I told my husband this isn't right he isn't getting any better. I couldn't keep his fevers down and I just felt hopeless. We went to the children's urgent care. They tried to keep his fever down and gave him medicine but nothing would take. They took us by ambulance to the children's hospital in Atlanta. He had a spinal tap done and many many other tests. We were there for a week. He started to be feel better. They said that he probably just had a virus. But to see a stomach doctor because his liver enzymes were up but should be down in six weeks. We thought we were in the clear. We went to the doctor and they took blood. They said they would call in a few days and it should be okay. They were wrong they were very very high. We got sent to a liver specialist. They couldn't figure out what was wrong. He seemed fine but his levels were outrageous. They called me on a friday said they want many doctors to look at him so they are going to admit him at the hospital. That Monday morning we go to get admitted. We saw many many doctors. He had a liver biopsy and a muscle biopsy. They had a idea that he had a genetic muscle problem but still didn't know. Finally almost 6 months later we get a diagnosis Aidan has Duchenne Muscular Dystrophy. Our world shattered We didn't know what to think, how to function, or what to even do at this point. We have never heard of this disease. We heard of Muscular Dystrophy but not this type. Aidan was with me when I received the news. I didn't cry in front of him. I just tried to be strong. That night we put the kids to bed. I sobbed like I never did before. He was my baby. My strong little boy and why for a boy that has been through so much has to deal with this the rest of his life. Next day I felt like I got hit by a truck. It started to get better, Instead of crying everyday it began to be every other day and so on. Now I do still have bad days but they are far in between. Aidan has been through many things but one thing he always has a smile on his face. We did adopt Aidan in November 2012. That was the greatest day for my husband and me and the family. Each day we keep on fighting for a cure. Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy.
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