Comments for Rett.com

Comment on Assistive technologies enable people with Rett Syndrome to say some amazing things by Young Mother in deep south Texas

Young Mother in deep south Texas — Thu, 07 Jan 2010 08:32:53 +0000

I have a 2 year old with Rett, and I’ve been terrified that she wouldn’t be able to communicate things with me. When her neurologist told me there was technology that assists to communicate, it didn’t make me happy, which was the response he was waiting for me to have. Instead, I was devastated that she would even need something like that in the first place. Your story has made me long for my littel girl Adeline to tell me she wants to see birds. This technology is not meant to put separate them more, nor is it something to shy away from. It is working with your daughter for her to express herself, and anything that will get my little one to share with others her feelings and opinions, I am all up for it. Thank you for sharing that experience with others, it gives me hope.

Comment on A familiar Rett syndrome story from Normalville by chris

chris — Sat, 17 Oct 2009 21:56:41 +0000

I think it is imperative that ALL hospitals, and pediatricians obtain The Rett Syndrome Handbook.
This book is like a crash course for rett syndrome, or “Rett 101″ i call it. Informative is the best word to describe the handbook.
It would be nice if you didn’t feel like you were speaking a different language, when explaining to doctors and nurses what Rett Syndrome is…we as parents shouldn’t have to, and wouldn’t have to if more physicians had this handbook.
If i had access to enough handbooks i would give them to as many pediatric physicians i could find, it would be a start anyway.
These are our angels, do whatever it takes.
proud father of hannah.

Comment on Dr. Adrian Bird serves as trustee of Rett Syndrome Research Trust by ricardo

ricardo — Fri, 15 May 2009 04:30:13 +0000

my baby has rett syndrome i want to know the news . If it has cure please answer me thanks . Sorry I don`t write well english. bey.

Comment on Rett Syndrome respite worker facing felony charges for neglect and abuse by Greg

Greg — Fri, 07 Dec 2007 12:01:43 +0000

Hi Amy,
Thanks so much for your kind comments. Thank you for your courage and for being such a great Mom to Stephanie and an inspiration to us all.
Greg

Comment on Rett Syndrome respite worker facing felony charges for neglect and abuse by Amy Davenport

Amy Davenport — Thu, 29 Nov 2007 14:28:13 +0000

Hello, I am Amy Davenport and thank you so much for getting our story out there. It was a long, difficult road to getting the Solicitors Office to go to the Grand Jury and get an inditment agaist Ms. Priester, which then resulted in her arrest. Stephanie has suffered so much and her injuries were life threatening and still affect her and always will. Thank you again for letting parents and caregivers know that you just have to persevere even when no one appears to be listening or wants to help you. I called the Solicitors Office every other week on a routine basis for 3 years. I went to South Carolina Law Enforcement Department – that has a special unit to investigate crimes against Vulnerable Adults. I went to the Attorney Generals Office, Sheriff Dept., Police Dept., anyone that I thought could help me get the Respite Care worker prosecuted. Hopefully, it will get easier for these type of cases to be prosecuted and law enforcement will not shy away from making an arrest. Thank you again. Amy and Stephanie

Comment on Louder Than Words: A Mother’s Journey in Healing Autism by Stephanie

Stephanie — Wed, 19 Sep 2007 23:38:00 +0000

I got into a situation back in February of 2007 right after the Rett research mice were “cured.” I ran across a blog created by a woman who calls herself the Rett Devil. She, along with several of her friends who are “high functioning” are offended by society wanting to find a cure for autism and related “disorders.” I tried to explain on this blog that the reason research for treatments are necessary are because there are individuals (like my 7 year old daughter and unlike those who can function) who cannot feed themselves, walk, talk, etc. and are completely dependent on their families and caregivers to interpret their needs and then take care of those needs. It is in these instances that a cure or some type of treatments would improve quality of life. If individuals who can function feel they do not need to be “cured,” then they don’t have to be. My comments on that particular blog were not appreciated, and I felt that they were not willing to see it from anyone else’s point of view. My hoping for some relief for my daughter were met with a response questioning my motives – “Are you wanting relief for your daughter or yourself?” How unfortunate that there are people so unwilling to accept that what is right for them isn’t right for another individual. I guess that’s what they feel as well. My point of view: Each individual should be allowed their own choice. The problem for most individuals with Rett is, they cannot make their wishes known and it is up to the caregivers/families to make the choice for them. I would like to see my daughter’s world opened up someday, and I believe she would like that too.

Comment on Assistive technologies enable people with Rett Syndrome to say some amazing things by Kelly

Kelly — Fri, 10 Aug 2007 17:59:42 +0000

This is SO encouraging for me!I long to “talk” with Brooklyn so much! I look forward to hearing more from you and Laura!

Comment on Is it possible to achieve “Rett Zen” while helping those with Rett syndrome? by Kelly

Kelly — Tue, 31 Jul 2007 00:49:53 +0000

Did I read your post right? Two young ladies with Rett? I am exhausted at just thinking about that possibility! I enjoyed your post and as a mom of a newly diagnosed daughter I look forward to reading all the suggestions other mothers might give as we strive towards “Rett Zen!”