Birthdays, Blessings, & Burdens

Posted Tuesday March 12, 2013 by Melissa

Today is Case’s 6th birthday and I could not let the day pass without acknowledging what a blessing he is in our life. I also want to note that not a day goes by where I don’t fully acknowledge how incredibly blessed we are for Case to have qualified for the clinical trial and to be doing so well, and that there is absolutely nothing we’ve done to deserve or achieve this blessing.

Being totally transparent, I’ve felt as of late a sense that I can only liken to a kind of survivor’s guilt for Case doing so well. My celebration never goes without the heartache I have for those friends who’ve already lost their child or may still in the future, and in fact, it’s not like I have assurance that it won’t still someday be us. But know that I will never live in the isolation of Case’s improvements – the benefit of our entire community is always on my heart.

Now that the natural history study has started and the Phase III trial feels imminent, I am hopeful for another group of boys to have this same chance, but I am fully aware that there are those among us who may not have the same opportunity. It is so important to do whatever we can as a community to both support research and clinical trial participation for the future, but also to support and bear one another’s burdens of those who cannot participate or who may not receive the benefit of current research. To the extent I can be part of that in any way, I am committed to do so.

Just as an update, I should also note that in the afternoon after his last dose, Case was throwing up and had a terrible headache for several hours. The fact that he could tell us his head hurt was just a blessing in itself since that was something he could never have expressed two years ago, but it certainly was troubling.

It lasted the evening and he was fine the next day, but it brought to bear that even with this trial, we are never assured an easy or certain road. Someone asked me whether the animals studies of this drug showed long-term risks that might be like this and I reminded them that this trial is the evaluation of the short-term and long-term risks. Such as it is.

Please join us in both celebrating Case’s birthday and in praying for his protection as this trial continues. Enjoy the video and photos. If you couldn’t see the video above, watch it on YouTube.

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One Response to “Birthdays, Blessings, & Burdens”

  1. Happy 6th Birthday Case! The party pictures speak volumes of the fun you are having! Stay strong and stay well!

    <3 Patty and Jesse

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