Author Archives: melelllan

Mother’s Day in Oz

I often say that living with Rett syndrome is like traveling in Oz with the Scarecrow, Tin Man and Lion. So, what would Mother’s Day look like there? I think it would happen in the Poppy Field. Such a beautiful … Continue reading

Posted in Mother's Day, Rett Syndrome, Special needs Mother's Day, Uncategorized, Wizard of Oz | Tagged , , , , , , , , , , , , , | 1 Comment

Poetry Month: Strength Inspired

I thought a lot about what should be the last poem I posted for Poetry Month. Should I go with hope? accepting your lot in life? the poem about the little girl who still counts her dead siblings as alive … Continue reading

Posted in cure, hope, Rett Research, Rett Syndrome, Trail to a Texas Trial | Tagged , , , , , , , | Leave a comment

Poetry Month: Pain inspired

Many, many years ago, while taking a course in college they gave us this book of poems, rather we BOUGHT this book of poems. And it is my favorite. I still read it from time to time. One of my … Continue reading

Posted in grief, national poetry month, Poetry, Rett Syndrome, Uncategorized | Tagged , , , , , | 1 Comment

April is Poetry Month-Katelin Inspired

One of the first “poems” I wrote that was inspired by Katie was actually turned into a book! “Tyler and the Spider” is a story of acceptance, no matter the differences. It’s meant to show that being nervous and afraid … Continue reading

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Let’s Break it Down-5 (Neuren Aims, Shoots, Scores! Slam Dunk!)

  Yes, we have finally reached the last part of the Pediatric Trial Results. Hooray. It was quite a challenge for me and hopefully I made it understandable for everyone. I want to thank those people who explained things to me … Continue reading

Posted in cure, hope, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , | 2 Comments

Let’s Break it Down-4

Well! If the last section was a stormy sea of up and down graphs and whirlpools of numbers, I think we’re in for some smoother sailing now! In the last post, three of the five measurements used in this trial … Continue reading

Posted in anxiety in Rett syndrome, Communication, cure, Dr. Walter Kaufmann, hand clasping in Rett syndrome, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial | Tagged , , , , , | Leave a comment

Let’s Break it Down-3 (Tipping the Scales)

So, here we go. I struggled with this section because of the graphs and numbers. There may be many of you who go…”What’s the big deal, so easy to understand!” Me, to say I’m good at math would be stretch … Continue reading

Posted in Neuren Pharmaceuticals, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, ucla statistics dept., Uncategorized | Tagged , , , , , | 2 Comments