Hey guys, I just found out that by the end of the year to the middle of next year, my son will lose his ability to walk without the support of either a knee brace or crutches. This isn't what I would normally do, and it embarrasses me to do so. But I would have to ask, if you could possibly send in donations. The medicine for this past month has already spent up the $500 I had been saving since the first checkup, and I'm just not going to be able to do it. I work minimum wage, my wife is 3 months away from giving birth to a baby girl, and it don't have the money to support this. I thought at first that this would just be a matter of patience, love, and compassion toward him, but now I see there is much more to it. I had asked the doctors if there was any way to cure it and they said no. He may only live into his early thirties if he is lucky. So please to all my family and friends that are following this, I hope that you could possibly donate something anything. I just want to make my son happy and that is extremely hard right now.
Tuesday, April 5, 2011
Week 3 after Check up
Well so far there hasn't seemed to be too much progression in the disease. His legs have gotten a little thicker, but he walks just fine. Maybe I over reacted and he won't need all of this stuff. But the doctors prescribed steroids for him (no he won't be super buff) and a few other tests will be done in the near future to see how bad the progression truly is. They will perform a muscle biopsy, and most likely another blood test. All I know is that this stuff is really worrying me and I don't know what else there is to do except for pray.
Week 2 after Check up
Well the test results have come back. Based on outward appearances and an abnormality that they had discovered, the doctors all concluded that he has Duchenne. I don't know what to say, but I did find out where he got it from. It was due to some chromosomal dominance and how the one X over powers the Y and how on the X there is a gene that isn't right and it causes dystrophin to not be present in muscles. They also said to watch out for his shoulders because they may be the next muscle group he will lose control of.
Week after Check up
Well as of right now the doctor says he will not experience the most severe of its symptoms, but he explained what will most likely happen to me. I don't know how it could have happened or where he inherited it from. My wife doesn't have it and neither do I and it is the first occurrence in both families. Maybe it has something to do with the genes. Anyways, as of now I'll be saving my money. Who knows what this could turn out to be like, and if what my doctor said is true, he may need leg braces or a wheelchair in the near future.
My son has Duchenne
So recently I was with my six year old son and I had realized something abnormal when he started to complain about his leg after walking a while. At first I thought nothing of it, then when I looked because he said it wouldn't stop hurting him his calf appeared to be swollen. This worried me but I figured I would look again tomorrow. When I looked it appeared the same and I decided it was time to have it looked at. As we talked to a doctor he said he can't be sure without some proper DNA test or a CPK test. We did both and the doctor said he believed it was Duchenne. A disease found more in boys than girls. I asked what the progression of the disease would be since I had never heard of it. Well lets just say that things may not be the greatest if what we were told is true.