About Rett

Understanding Rett Syndrome

Newly Diagnosed

Getting the diagnosis of Rett syndrome is difficult, but there are many people who are willing to help you, beginning with IRSF. Here are a few places to start.

About Rett Syndrome

Rett syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.

Living with Rett Syndrome

The goal in selecting the right educational or day program setting for your child should be to provide her with the most stimulating program in the least restrictive environment, taking into account each child’s own special needs and personality.

Family Support

FamilyMatters is a series of topical questions posed to various IRSF online Rett communities by the IRSF Family Support Board (FSB). Our goal is to tap into the vast wisdom of parents and caregivers who most often are the best resource for solutions to the practical, common, day-to-day issues, concerns and dilemmas we all face. The community answers will be summarized here for everyone’s benefit.

Get Connected

Connect with the Rett Syndrome Foundation and others in the Rett Syndrome community through social media or join one of IRSF’s Support Networks today. IRSF offers numerous support networks in an effort to provide the specific support tailored to the needs of you and your family.

Resource Center

9 thoughts on “About Rett

  • Loved loved the “Daddy dance”. That was so awesome. Hope you don’t mind that I reposted on fb. My 5-yr old g’daughter has Rett. She was 3 when diagnosed. It has been a very tumultuous 5 years.
    Libby is now attending Boshears in Tyler, Tx. Today she got to ride a horse AND swim in “the spa room” (a small pool) w/a therapist. So far, we think those are her favorite “sports”. Libby can walk & is learning to communicate w/her eyes. Love our Angel.
    Wishing your Angel the best & many more healthy learning years.

    • I don’t mind at all. The more these things get out there, the more we can help girls like my daughter and your granddaughter. I get the tumult. It’s difficult for everyone involved. But there really is so much hope and that’s what we’re fighting for. Thanks for following along.

  • What is the computer that you have in one of your videos? How is she able to select what she wants to say?

    • It’s a Tobii Dynavox Eye gaze computer. There are images programmed in and when she looks at an image it triggers the voice. When she gets older she’ll be able to spell what she wants to say just by looking at the letters.

  • Hi!
    My name is Mirko, and my wife’s name is Nina. I am Italian and my wife is Russian. Our little daughter Mia Arsenia has been lately diagnosted with Rett syndrome. She is 2 years and 10 months old. We have tried to find what’s wrog with our baby since she was 1 year old. Finally we got the results of the DNA analisys. We live in Russia now, but we are moving to Italy in the next few weeks. Looking at your site and at your channel on youtube gives us hope, and shows, that we are not alone. Mia and Magnolia are really similar, they are both beautiful! I really hope that we can give our little princess all the love she need, and we’ll do everything for her to feel safe. I hope to get some of your contacts, to contact you directly, it would help a lot! We all hope we’ll fine a cure soon!
    have a nice day!
    Mirko, Nina and little Mia Arsenia

    • Thank you for reaching out. So sorry to hear about your diagnosis. There is a lot of hope that we will beat this thing. You can email me through the blog and I’ll be happy to answer any questions you have.

  • Hi, my name is Elizabeth, I am from Ecuador. My daughter was diagnosticated with Rett Syndrome. But since she was 2 years old, she lost motor and cognitive abilities, But any doctor could give me a definitive diagnosis, nevertheless the year 2016 we manage to realize a genetic examination where I confirm to him the indicated diagnosis. Now she is 7 years old and we have not seen any advance in spite of having been in constant therapies from 2 years.
    To see Maggie’s videoes they have woken up in my hope that for several times many doctors have extinguished saying that these children havenĀ“t improvement or cure someone.

    Please it wanted to contact me you and to realize the same treatment on my girl.

    • Hi Elizabeth! Thanks so much for following along! I’m so sorry to hear about your diagnosis, but know there is real hope and we are getting closer and closer. Please feel free to contact us any time with questions. Facebook or you can email us through this site. You’re not alone in this.

      • Thanks for your support and prompt response. I have several questions that I do not know where to start. My personal email is cadenaelizabeth892@gmail.com
        I would like to know what is the best I can do to help you communicate, how to work on it. Should I medicate her? Because the doctor had recommended us to give GOVAL, which is an anxiolytic medicine.
        Please wait your answers.

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