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Thursday, March 4, 2010

I watched as some joggers passed by my house today. My eyes following their young thin physiques. Watching as perfectly formed athletic calves carried these athletes. They appeared almost graceful like, darting over puddles from the remains of winter. Standing there still holding the phone from the devastating call I had just received, tears began to run down my face.

Once again we were faced with another heart felt disappointment. The drug trial that had brought hope back into our lives the last few months closed. Recent medical data showed no signs of increase muscle strength had been proven. I had just been told the drug PTC124 was in fact not working. The study was closed taking with it our renewed hope. Angry at myself, I fought hard to hold back tears. I had known better than to get overly excited and build up hope. Letting my mind be controlled with my heart, I grabbed the chance to feel myself embrace the glimmer of light. Wanting desperately to believe that is was possible for science to finally have found a treatment to help stop the progression of Duchenne Muscular Dystrophy.

Turning away from my window still holding the phone, I knew I needed to make calls. I needed to have someone tell me I would find away to put aside my sorrow and continue to be the strength that I had been for my boys. Being a single parent seemed to always have me searching for someone to help me walk through the hurts. Who could I burden today with my pain, I wondered. I cried, as I let self pity flood me. In a few hours my sons would be home. I knew I would have to pull myself together. I would have to stand alone in front of the beautiful brown eyes of my sons and tell them the study was over. Somehow I had to find away to hide my tears and search for the delicate words that would not destroy all the hope for my sons.

I thought about hope for a moment. We as humans clung to it like the air we needed to breathe. Each day it kept us going facing our fear and heartache. Pulling us through despair. I wanted to stop the overwhelming disappointment I was feeling. I still had hope I thought. But, for the first time in many years I did not feel hope was something that would help Cody. Reality screamed at me, his door was closing. Cody was losing time. I knew this disease like the back of my hand. I had seen it take my brothers lives. I saw how it ripped apart family members. I knew how it broke peoples spirits. Most importantly I knew it killed. It killed dreams and hope, before claiming its victims.

Drying my eyes, I knew courage was something I did have in me. For now it appeared Duchenne was winning this battle. However, the fight was not over and for my sons I would be the warrior striving to find some weapon to slow my enemy. I would face this moment with courage. I would not let My beloved children feel we had been defeated. We would be strong for each other, we would be strong because that was all we knew how to be.

2 comments:

  1. Well we as humans can only try and have hope, the result is not in our hands but we can sure give these children the best possible care. May be the God has given us these children for serving them and they are certainly so intelligent and vibrant ...they are interesting to talk to always... that is a big solace for me.
    KEEP UP THE FAITH.
    May be exon skipping??? who knows??
    Regards
    GD

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  2. don't lose hope, make there lives as happy as possible. PTC124 was one of a few different drugs they are working on. yeah, i agree, it a kick in guts alright. exon skipping i think is one way of going or using your bodies own stem cells ( after reprogramming ) is another way. there is big money invested by a lot of companies, they are not going to say " oh well, that's the way it is " no way, they want a return or the share holders will be less than happy. i never gave up, you can't afford to.....

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