My sweet seven year old, Quinn, has a very rare neuro-muscular disease. There's no cure and an unknown prognosis. All we know is what he deals with every day; pain, muscle weakness, waisting and eventually paralysis. The disease is mainly in his arms but it has moved around to his back and neck for the last few months. When sitting or laying still for any length of time, his body stiffens and is difficult to free up, just like old bones.
I just got through watching, "The Curious Case of Benjamin Button," and couldn't help but seeing such similarities with Benjamin's plight; a young mind in an old body. Hopefully someday there will be a cure, or at least a better treatment than what Quinn has now, a pill that his grandma also takes, Lyrica. (Though Quinn's dosage is larger.) His neurologist said that once the offending gene is found, research usually takes off. The gene to Heredity Neuralgic Amyotrophy was found around 2003.
Maybe one day my own Button won't have to feel pain and walk like an old man.
3 comments:
Oh my, that is so incredibly sad! How difficult it must be to watch your sweet little boy go through such terrible pain. And an unknown prognosis, I can't even imagine what that is like. I'm so sorry. Thanks for sharing your story, it touched me.
Your family is just breath-takingly adorable. I don't even know you, but I love that pic of you guys on your banner!
Thanks for the blog love and putting up my button. I sometimes click over from my sitemeter to check referring blogs out {but I rarely comment, so don't think I'm a stalker!}
Thanks again,
Nat aka HG
We will keep your Spicy, Dirty little eyeball-artist in our prayers.
Hey T -thank-you and you're welcome. I'm so glad you've had success, don't be stranger and let me know, okay??
PS on the popcorn, please see my update before making it! Aussie mallows are different to American mallows, so I am now suggesting to use have marshmallow creme so you don't end up with a goey ball of a mess like I did when I made them last month and my Mom's!
Good luck!
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