Sept 20

Today is our fundraiser Shark Tournament all proceeds go for research for CMT. Great time spent with fellow CMTers and friends to support our cause for a cure.

My CMT Journey continues..... On one of our visits to the Shriners, Joel shared with me how some of the kids at school and church were teasing him. It broke my heart to see Joel getting teased with being different. I thought if I surrounded my son around positive people then he would have a healthy environment to grow in. He continued to ask how come he has to have this disease. I tried to explain about the power of prayer and we will continue to pray for God to heal or allow a cure to be found. My son's heart was heavy. The appointment was non eventful. I tried to be upbeat and say where do you want to go for lunch? Sometimes we stopped at the mall in Bradenton. I never was one to like shopping, but my son loved it. On the way out of the hospital, my mind was focused on trying to bring comfort to my son. “Lord”, I prayed, “I need help here.” A woman was wheeling in a little boy about 2 years old in a wagon. He had casts on both his legs. When we got into the car my son said, “Mom what we have isn't that bad, lets pray for God to heal that little boy in the wagon and others like him”. So that is what we did. Of course as a mom I immediately filled up with tears. I whispered a little “Thank you, Lord”. I remember Joel finding a pair of Leg Braces in my closet. He said, “Mom, how come you never wear these?” What could I say, here I'm trying to encourage my son to try different things and see if it would improve his life and yet I wasn't doing it. He said, I think you should wear these. So I started to. At first it felt like I was wearing stilts. There hot and uncomfortable. But I had to be a role model for my son right? I remember when my dad passed away we found a pair of AFO's in his closet. Guess he didn't like them either, as he never wore his. Eventually I got used to wearing my braces. In order to prevent tripping I always walked with my head down so I could see where I was walking. The muscles to lift up my foot were already atrophied. But with the AFO's my foot was lifted up and I was able to look straight ahead. I went to a park and walked. It was wonderful to see a beautiful world around me. “Foot and ankle muscle weakness is the single most debilitating problem with CMT. AFO's are used in reducing foot drop.” (Lower Extremity Review Drop foot fix for CMT). Several years later, in Sept 2000, I got re-married to my husband Doug. I can't wear heals and trying to find shoes to wear with leg braces and be fashionable was quite the challenge, A friend from church made me beautiful wedding sneakers for me to wear on my wedding day. I walked down the aisle with my head held high and saw all my beautiful guests. Didn't even worry about tripping. The only time I looked down was to pray. 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 age 13

Doug and I

wedding shoes

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

Sept 18, My CMT Journey continues...Day of Prayer for a cure for CMT

One day my sister, Patty and her husband, Ray, invited Joel and I to go down to the Yacht Club to fish. While enjoying the serenity and beauty of the sunset the peer started to shake. When I looked up I saw people running off the peer. I asked a man what was going on and he pointed in back of us, a storm was about to brew. My brother in law, my nephew, Scott, and Joel took what they could and ran off the peer. Patty and I were unable to run due to CMT. We grabbed our poles and walked as fast as we could. The wind picked up and blew with such force. I became fearful as the heavens opened with rain and hail slapping against my face and body. We were bombarded for several minutes with these stinging pellets. I couldn't see.  I knew Patty was walking in front of me so I grabbed onto her shirt. The wind was so fierce it felt like we were going to be been blown into the water. All of a sudden I started laughing. I thought boy what a comedy team. Just when we were about to get into safety, another glitch. When we got to the end of the peer, my fishing pole got snagged onto a tree. It's now starting to lighten and thunder. But, I continued to laugh as my sister and I got the pole loose. In the back ground I can hear the windshield wipers from the cars sitting in the parking lot. It sounded like applause. I wanted to turn to my audience watching us and bow. Later that night as I looked back on the day, I realized how despaired I would have been if I had to endure that journey alone. My sister being with me  truly helped ease the burden and even bring laughter. "Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble" (Eccl 4:9-10 TLB). We never know when a storm is about to approach. That is why it so important to stay connected with a support system. Not everyone has family members that understand their trials. I know my mom was devastated that two of her children had CMT. But what a blessing that my sister and I have each other and my son has the both of us to run things off of. My dad never spoke of his CMT. It was the unspoken elephant in the room. I have family members who still refuse to see the seriousness of this disease. They believe that I am being dramatic. Even sharing my story brings a negative response. Today thanks to technology and the internet, there are several chat rooms with people who struggle with what you are enduring. MDA and Facebook have support groups for CMT patients .Their is no healing in isolation but there is  healing in communicating with others. The importance of support is finding others who understand.

  http://www.cmtausa.org/url/sharkchallenge .. To be continued. If you feel led to give any donations for researching a cure, you can give online at or to the MDA http://www2.mda.org/goto/CMTChallenge 

Joel, Ray, Scott and Patty

Patty and I

Sept 17^th My CMT Journey continues...

When dad died I blamed my poor choices in making God angry. Mom's death brought God's grace and love. I stood by moms side while she was dying  held her hand knowing how frightened she was in dying, I talked her into taking the hands of Jesus. A super natural event occurred.  I felt like I was walking mom into the gates of heaven. When we arrived the gates opened and I handed her over to Jesus. I felt so much love,  peace and joy. I was so overcome with these emotions I had all I could do to contain myself from bursting with praise and song while my family wept. I was glowing throughout the funeral. Couldn't stop smiling. Than Jesus brought me back to earth. I grieved and my heart was broken. I understood that God may not answer prayer in the way I want, but He is always there to hold me up. A few months later my son was diagnosed in having CMT. “Some parents say that they had a feeling, long before the diagnosis was finally made, that something was wrong. In many cases, with a hereditary disorder, it was almost a situation of waiting for what they most feared: the same diagnosis that plagued their own youth. But, until the confirmation of their fears, they denied those feelings. This type of reaction is a very healthy emotion. It gives the person time to accept, adjust, and make plans. It can also protect a parent from too much pain, too soon.” (cmtausa, My Child Has CMT). I think my mom surmised it. I respect her self control in not voicing her concerns to me.  When people say God will not give you more than you can handle, let me tell you the truth. The verse that statement is referring to is 1 Cor 10:13 and it is about temptation. God will not tempt you for more than you are able to stand without providing a way out. But yes, life is hard and some people have it more difficult than others. If life wasn't problematic why would we need a Savior? One night, after my son went to bed, I sat on the floor in my bedroom and just started weeping. I grieved over the loss of my mom and the hardships I knew my son was facing with CMT. I just felt like all my prayers were answered as a no. I prayed for my marriage to be healed, my dad to survive and get better, my mother to get well and my son to be spared of CMT. While lying on the floor crying I felt a hand on my shoulder, it startled me but when I turned around no one was there. I then heard an inner voice, “It is I who made Joel, not you. I made him for a very special reason and a purpose”. I knew it was my comfort from God. Although the pain still remained, I was filled with such peace and love. I got up off the floor and crawl into bed and slept. I knew that whatever came our way God would carry us through. There's a Bible verse in Jeremiah 33:3, “Call to me and I will answer you and show you great and mighty things you do not know”.  I know God is going to work through Joel to accomplish much. I attended a beautiful church and it was my church families prayers that were the glue that held me together. 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 

Me and Joel

3 generations of CMT
me, my dad and son

Mom who I had the privilege
of walking into heaven

Sept 16, My CMT Journey continued....

I focused all my energy on raising my son, volunteering when I could and being a care taker for my mom. She was diagnosed with emphysema. My brother Ed and his wife Angela moved in with mom. Their son Paul was born in April, 1994. Mom was so happy in her new grandson being born. Each day she woke up to his smiles and that brought joy to her day. My mom used to worry about her grandchildren inheriting CMT. No one was showing symptoms. Although mom watched closely and sometimes she would have a melancholy look about her. Mom, decided to have an experimental surgery out in California. The reviews were good and it was to help emphysema patients improve the quality of their life. In, October 1994, I went with my mom to California. We were there for four weeks. It was a month of emotions. I was so worried about her making it through the surgery. A good friend of my moms and one we called Aunt Margie, came from Florida as a support for both mom and I. Because of my CMT, and my hands unable to grasp things well, we had quite a few mishaps and laughs along our journey. One such incident was when mom and I were coming out of the van that took us from the hotel to the hospital. I was holding onto moms oxygen tank while helping her out. The oxygen slipped from my hands and boom fell onto the ground. The van was running and the oxygen tube was still attached to mom. The driver had a look of horror on his face as he quickly grabbed the oxygen tank which was rolling under the van. Mom said, “Ellen, I survived the surgery, but your going to kill me yet while I try and recover”. When we got home, I would go over and visit mom while Joel was in school. One time she asked if I would get some milk and bread at the store. I said OK, but I was in a rush. Then she asked if she could come with me. I know I had an attitude. It would be so much easier to do it myself. I said, “Alright, but we have to make it quick”. I look back on this now and wished I spent more time with her. Today, I can relate on how mom may have felt. On May 17, 1995, my mom passed away. Another time of heavy grieving and numbness. My son was now in middle school. I just didn't think I could handle any more grief. My mom was my rock. My sister Patty and I relied on her strength and her ability to support us in our choices. Before the age of 40 I lost both my parents, but my brother was only in his early 30's. It just wasn't fair. This grief was different. It tore our family apart for a season where as my dad's death brought us closer to each other and our mom. Mom was the matriarch of our family. If you feel led to give towards researching a cure, you can go to either site on line http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge 

Mom at hospital

Mom with her girls and grandsons

Joel with Paul

Sept 15, My CMT Journey continues....

My was dad was missed. We all grieved and as a family we supported my mom. She always loved Christmas so we made Christmas a joyous time for her. While recovering from my losses a good friend encouraged me to go back to college. I spent the next several years raising my son as a single mom and getting a degree in Human Services. I was asked to help volunteer at a local Middle School where I was able to counsel children who lived with alcohol abuse. I was hoping to end the cycle of hurting children hurting other children. Only God could bring healing from my past of bullying and abuse from my peers to now teach this same age group, ways to cope and not hurt others. Two topics I wanted to instill in the children, were self-control and think. I brought in a bag of potato chips and told them they could have just one. I then went on with the lesson in the book. Each child would either try and grab for another chip or were frustrated with the chips in a bowl right in front of them. I told them most people who have addictions can not concentrate on anything other than having the next drink or the next high. It's not easy for addicts to just quit. I then taught them the importance of thinking. Use self control and think before you speak. Would you want someone to treat you in the way you treat others. And most times these children were treated unfairly, so I would tell them this room is a safe place for you. We encouraged them to exchange phone numbers with each other and to talk with their guidance counselor. Many of the students who were persistent in coming did better on their grades. One day a week for one hour, this would be their support system, their safety net. They were given tools on how to act not re-act. The guidance counselor welcomed us back each year. Then she moved on to another school and the new counselor was not as supportive so the program closed. 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 at http://www2.mda.org/goto/CMTChallenge

My Family

My Graduation

Sept 14, My CMT Journey continues....

Joel just absolutely adored his Nana and Papa. It was a celebration for sure when my mom had all her children and grandchildren in the same state. The year,1988 was exciting with a new home and new friends for both Joel and I. I prayed this day would come. How sweet it is when prayers are answered in our favor! Although, Patty and I had each other during the holidays, it was a wonderful time to spend Birthdays, Thanksgiving, Easter and Christmas with the rest of my family. Happy times filled with laughter. Of course what would a family gathering be like without strife. I looked to family members for support and encouragement. But, sometimes one's family may not be the ones to go to. So I found another support group and attended two times a week. My marriage was starting to crumble. I had the attitude that if my husband didn't straighten out his life I always have my family to help financially and my group to help emotionally. I thought if this marriage was from God, it wouldn't be so hard to work on. Friends, how wrong I was. Relationships take a lot of work. Some more than others, and it takes both parties to work on it in order for it to be healthy. It only takes one to break it apart. The thing that kept coming up in my head was a statement someone said my mom made years ago. Whenever she had an argument with my father, she supposedly said, “If he wasn't handicapped I would leave him”. I don't think my mom knew those words would find their way back to me. I didn't want my husband to stay in a marriage out of pity. I wanted him to stay and fight for us because he loved us. So, I gave my husband an ultimatum, either get into counseling or I'm filing for separation. He left. That day my son cried in his sleep for his daddy. The pain was so unbearable for me listening to him. I cried, I prayed, I didn't know what to do. I felt that I wanted my son to have a dad that would support him and love him. I learned to not make empty threats so I had to follow through.. However, the purpose of doing so was to bring my husband back in a willing manner to work on our issues. I unexpectedly met someone. We started dating. I felt so alive, beautiful and most definitely deceived. The enemy knows exactly what it takes to cause you to fall. My husband never said encouraging words to me or made me feel attractive so when others did I got caught up in the deception. My husband couldn't handle me dating someone else so he filed for divorce. The man I was dating left me shortly after for someone else. Then, sorrow came, my dad passed away in 1989 at the age of 62. I was devastated. My dad died unexpectedly and it was a shock for all. He wasn't feeling well that week. He was having black outs where he didn't remember things. The doctor just watched closely and didn't see an emergence in putting my dad

Dad with Joel

Scott, Joel and Christine (Cousins)

in the hospital. I was sure my decision to separate from my husband caused God's anger and took my dad's life. Remember my faith at the time was based on works. They call that Karma and it's belief can lead to destructive bondage. My mom decided not to have an autopsy so we never really determined the cause of death. Although they assured us it was not CMT related. I wonder if deep down inside my mom was concerned perhaps it was and didn't want to put any more fear into her life or ours. “CMT never affects the brain and it usually does not affect life expectancy, but can, in rare instances, cause severe disability” (CMTA What is CMT). To be continued.....If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge