Category Archives: Communication

Ashtyn’s Story

Posted on February 23, 2023 by melelllan

Part VI of this series demonstrates the human capacity to take adversity and find the good. In the Rett world, adversity comes at us from so many angles, but, if we’re lucky and if we have open hearts and minds, … Continue reading →

Posted in acceptance, Communication, Education, Rett Syndrome, Trail to a Texas Trial | Tagged , , | Leave a comment

ASCEND 2022!

Posted on May 11, 2022 by melelllan

After a VERY long hiatus, the annual/biannual Rett syndrome Family Conference came back with a BANG! The backdrop being the incredible, but entirely too large, Gaylord Resort, Nashville. Thank you to IRSF for putting together such a massive and comprehensive … Continue reading →

Posted in Acadia, Anavex, Ascend Rett syndrome conference 2022, boys with Rett syndrome, clinicaltrials.gov, Communication, David Clements, Dr. Helen Leonard, Dr. Walter Kaufmann, FDA, fund-raising for rett syndrome, hope, Huda Zoghbi, Kevin Black, LAVENDER TRIAL, Raising a Hand, Rett Research, rettsyndrome.org, Telethon for Kids, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , , , , , , , , , , , | Leave a comment

A Chat with Dr. Pichard of IRSF

Posted on December 20, 2021 by melelllan

Disclaimer: Unless specifically stated, the possible benefits down the line are my opinion alone. As one might imagine, I and other parents have a ton of questions since the results of the Trofinetide Phase III came out. One of the … Continue reading →

Posted in Acadia, anxiety in Rett syndrome, Breathing issues in Rett syndrome, clinicaltrials.gov, Communication, Daffodil trial, Dame Margaret Brimble, Dr. Helen Leonard, LAVENDER TRIAL, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettsyndrome.org, screaming in rett syndrome, Talking, Trofinetide Phase III | Tagged , | Leave a comment

Rett syndrome Awareness Month #10 Letting Go and Holding On

Posted on October 17, 2021 by melelllan

I remember, when Katelin was young, watching her lose her skills over an eternity of three months. I was DETERMINED to give her normal childhood experiences. I put her on a swing with a back but no front, she fell … Continue reading →

Posted in acceptance, anxiety in Rett syndrome, baseball, Communication, Education, hope, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Special needs siblings, Trail to a Texas Trial | Leave a comment

Rett syndrome Awareness Month #2 Sucker Punches

Posted on October 2, 2021 by melelllan

Rettsyndrome.org has a glossary of words and definitions! I must admit that I only recently learned this, so kudos to whomever put this all together. When Katelin was first tentatively diagnosed with Rett syndrome at the age of 18 months … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, Breathing issues in Rett syndrome, Communication, Education, grief, hand clasping in Rett syndrome, homeschooling, Human body, Pain in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , , , , | Leave a comment

A Rose by Any Other Name…is Still Rett Syndrome

Posted on April 9, 2021 by melelllan

This is something I’ve wanted to get off my chest for sometime, years actually. It’s bothered me at times, hurt me at times, frustrated me often and made me hurt for others so many times I can’t count. It’s the … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, Breathing issues in Rett syndrome, Communication, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | 5 Comments

A Sucker Punch

Posted on October 14, 2020 by melelllan

This is a hard post to write. I got sucker punched yesterday. Without warning, I had to answer one of “those” questionnaires. You know, the ones which go… Can your child do this- (2) for always or often (1) for … Continue reading →

Posted in Acadia, Ataxia, Communication, grief, Neuren Pharmaceuticals, Rett syndrome Awareness, Talking, Trail to a Texas Trial, Trofinetide | 1 Comment

Thoughts on a Lonely October Night

Posted on October 7, 2020 by melelllan

When people ask us parents… what would you like the rest of us to know about your child?… our go to answer is usually… just because she can’t talk doesn’t mean she can’t hear you, understand you or learn. The … Continue reading →

Posted in acceptance, boys with Rett syndrome, Communication, grief, Rett syndrome Awareness, Talking, Trail to a Texas Trial, Uncategorized | Tagged , , | Leave a comment

October Pandemic

Posted on October 1, 2020 by melelllan

It’s been nearly three months since I’ve put my pen to paper here, on this blog I love. The world is being ravaged by a pandemic and every day is a struggle to get by, to find some normalcy, some … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, Breathing issues in Rett syndrome, Communication, Death in Rett syndrome, Education, grief, hand clasping in Rett syndrome, Pain in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, screaming in rett syndrome, Trail to a Texas Trial | Tagged , | 1 Comment

A Day with Acadia- Part 1: Awareness

Posted on October 30, 2019 by melelllan

This is my last post of Rett syndrome Awareness month. I had hoped to do more, but Rett syndrome made sure a good amount of awareness was happening right at home, but this was going to be the last either … Continue reading →

Posted in Acadia, Anavex, Anavex 2-73, Communication, Dame Margaret Brimble, fund-raising for rett syndrome, gp2c, hope, ketamine, kyphosis, Neuren, Neuren Pharmaceuticals, Newron, NNZ-2566, NNZ-2566 trial, Remarkable Rett-a podcast series, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, RSRT, sarizotan, service dog, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | Leave a comment