Tag Archives: armand’s hope

Charmed, I’m Sure

My family and I are attempting to start a larger-scale charitable organization based around helping fund research into treatments and cures for rare diseases, and helping parents, patients, and family members find these treatments.  The organization will be called the … Continue reading

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Eye Cee You

We are up early after a relatively uneventful night, getting Armand his in-clinic eye exam.  He did have on seizure back at the hotel, and Lindy was awakened around 4am by the sounds of a nearly-pukey Armand, but some hands … Continue reading

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Armand’s Big Day

I’ll keep updating this post as the day goes on and we talk to more doctors before or after each procedure he’s having today. First he’ll have an MRI, then up to the OR for his lumbar puncture, and eye … Continue reading

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Article: Gene Therapy Coming of Age?

Experimental gene treatments are being used to treat neurodegenerative rare diseases. I’ve posted before about how viruses are being used to encode new, “corrected” genetic strands in patients with diseases of the brain.  Now, scientists are using these viruses to treat … Continue reading

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Day Three

Today was a pretty easy day. We met with Dr. Karachunski about Armand’s MRI, which came back unchanged from his previous tests as far as progression and white matter.  He said basically to keep doing what we’re doing, that we … Continue reading

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Updating, Updating, Updating All The Things

I am merely putting this post here as a placeholder as we get news about the day.  Sort of a liveblog of the parade of doctors as they come out.  Bookmark this page and I will update as I can. … Continue reading

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Day One

Last night was a bit of a rough night for Armand.  He threw up a bit during the evening, then woke up biting his lip during the night, followed by five of his “scary” seizures during the night (his first … Continue reading

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