CMT:

CMT1A is a rare (1:5,000) hereditary motor and sensory demyelinating peripheral neuropathy (also known as Hereditary Motor and Sensory Neuropathy, HMSN) which is caused by an intrachromosomal duplication and consecutive toxic overexpression of the PMP22 gene on chromosome 17. CMT1A is one of the most common inherited peripheral nerve-related disorders which is passed down through families in an autosomal dominant fashion. CMT1A disease becomes evident in young adulthood and slowly progresses with distally pronounced muscle weakness and numbness. Pain can range from mild to severe. The disease can be highly debilitating with patients becoming wheel chair-bound and is often accompanied by severe cases of neurological pain. There is no known cure for this incapacitating disease.

Sunday, October 12, 2014

Dedication to my Husband Brandon

I want to take this time to write down what the world needs to know about my husband Brandon. First he is an amazing Father to our 10 year old daughter and we are each others soul mates. Now that you know that I can get into what this post is really about. Its about Brandon a young man, who in my opinion deserves the whole world to know how amazing he is. Brandon married me, a girl with a disease that he had never heard about, and to be honest I don't think him or me really understood what that meant for us as a couple. For the most part in the beginning, we both just did what we knew I could handle or how I could handle things. He pushed me around in a manual wheel chair whenever we went to big places like zoo's, theme parks, malls, ect. We knew that when a venture like that was done I would be in extreme pain and would need extra help for the next few days to come. But for the most part unless we did something like that, we both kind of forgot about the disease. As the years went by the disease started to affect me more and more. Brandon had to sometimes stay home from work to help take care of Jade because I couldn't move. Well in January 2011 (the story about what happened is in my blog) I became bound to a wheel-chair/power chair, I could no longer walk. This combined with all of the other difficulties this disease was causing me, weakness in my arms, hands and debilitating pain. My husband had to become my care taker. Now this is where I want to stop you, just take a moment and understand that, a young man had to stay home with his young wife to take care of her everyday. My husband did this without a second thought, after he heard what the doctors told him and what he was witnessing, he knew what he had to do. For the past almost 4 years since our lives got turned upside down at such a young age, Brandon has always taken care of me, showed me love, and the most important thing compassion!! What man out there can stay home with his young wife everyday, watch her suffer in extreme pain day in and day out for 4 years and never once not show compassion when she is hurting or needs help.
He doesn't have a dream job, a master's degree, a million dollars, a medal or a respectable title but in my opinion, in society's eyes he should be cheered for and praised, for what he does everyday! He has the hardest job in the world, watching his loved one suffer. Now I know I say thank you and how incredible you are everyday but today I chose to write it all down for the world to see! Thank you for being the most amazing man on this planet and thank you for showing me compassion everyday.

My life is truly wonderful, yes wonderful! I am so happy! Most people look at me a little off when I say how happy I am and how blessed I am. Just because my life is hard does not mean it is not blessed and filled with joy!

2 comments:

  1. wow...you are right! What an amazing husband, what a couple you are.
    with Love,
    Ema

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  2. Damn it girl...you really wanted me to cry tonight, didn't you?! LOL I've never doubted how special that man by your side is, Tya, not for one second. His devotion has always moved me. From hence forth, he shall be known as... Sir Brandon! It's not a degree or dream job, but it's a well deserved title! Oh, and if we ever won the lottery, my husband and I both agree that at least a mil would be yours. ;-)

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