Sept 19 My CMT Journey continues.....

My sister Patty's son, Scott, is CMT free . Our focus now was finding help for my son, Joel. Patty researched and found that the Shriners help with neuro muscular diseases. So Patty, Joel, my niece Christine and I went up to Tampa and had my son diagnosed and confirmed he had CMT. I was cranky and irritable. Deep down inside I was trying to hold it together as I didn't want to show my emotions to Joel. I'm sure this must have been how my mother felt. What I love about my family is the ability to make a serious situation into a game. I remember Christine joking around and Joel playing with the equipment in the room while we were waiting for the doctor to come in and examine Joel. The doctor explained the only treatment was AFO's, leg braces. Joel was not interested in getting leg braces at this time. All the surgeries my sister and I had did not show success. Doctors don't even do those types of procedures any more. I am glad my mother was not here to know that the pain and suffering Patty and I endured as children did not help us. We stopped for lunch on the way home. Every six months we went to the Shriners and each time Patty took the ride with us and we made it into an adventure. My son used to call CMT “That sharks tooth disease”. I am so thankful for the support of my sister Patty and niece Christine. Like yesterdays post, I think if you have others walk a difficult road with you it truly does make the hardships bearable. When I was attending the church that supported Joel and I during my difficulties, I had the church pastor and leaders come to my house a few years prior to this day to pray over Joel. I used the James 5:14 action, “Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord”. Joel was a bit apprehensive. But the pastor shared a story about a young man in the Bible named, David. How God sent someone to anoint David with oil and pray over him. David was afraid too. But God saw David as a King. This seemed to help my son relax and our pastor and friends who were in leadership prayed over both Joel and I. Of course their prayer were for Joel to be spared of CMT, but for God to use Joel for His glory however way He chooses. I was concerned if Joel would want me to refer to him as King after his anointing but he didn't. “Thus far, more than 50 different CMT genes have been reported; However, we and other expect more than 100 genes to be responsible for CMT. With this many genes the molecular “puzzle” will be solvable (Dr Stephan Zuchner University Of Miami School of Medicine) .. To be continued. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge 

Joel at the age he was
prayed over

Joel with cousins