Sibling Sounding Board

sibling sounding board 3

Highlighting a very special sibling this month!

Kaylie A.  recently put together an outstanding presentation for her Science Buddies project.

Showing great initiative she put together a list of questions for Rett parents and guardians-

 

 

 

 

 

Age of Onset of Common Rett Syndrome Symptoms

To keep this project completely anonymous, any surveys that contain personal information, including names, will be discarded.

1. What is your family member with Rett Syndrome’s birth date? (Ex. 2/3/11)
2. What is your family member with Rett Syndrome’s current age?
3. What was your family member with Rett Syndrome’s age at their diagnosis?
4. What is your family member with Rett Syndrome’s mutation? (Ex. R255X)
5. At what age if/when did the following occur: (Please put n/a if not applicable. Do not leave boxes blank.)

Loss of Speech, Epileptic Episodes Loss of Mobility, Loss of Purposeful Hand, Use Loss of Ability to Self Feed,

Eating Difficulties Breath Holding/ Hyperventilating Scoliosis Diagnosis Deveopmental Delay Stereotypical Hand Movements

And what would any medical information form be without the consent!!
6. I consent to the use of the anonymous information I gave in this survey.

 

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And the Rett community came through, giving her enough responses to put together this totally awesome presentation!

I was really impressed by the professionalism and forethought that went into this project and I love what she had to say

in her own words….

I chose to do this project on Rett Syndrome because of my sister Julie Grace. I did it all for her. After going to many therapies and doctors’ appointments with her, I have become very interested in not only Rett Syndrome, but also genetics. I hope to go to school to become a Physical and Occupational Therapist. I originally just looked on the Science Buddies website for a project that had to do with genetics. I found one that talked about different mutations in Cystic Fibrosis. My mom showed me the InterRett Output Database. I saw that they had the average age of onset of epilepsy, so I combined that with the Science Buddies project and after a lot of thinking, I came up with my project. “Which genetic mutation type causes the earliest age of onset of the ten common symptoms of Rett Syndrome?” My main goal of the project was awareness. I just wanted to put it out there because really only my close friends know about it. Plus it gave me an excuse to talk about it a lot! I don’t think there was really a hard part of this project. I loved doing it and reading the little stories people would add in about their girl walking or talking! I just found the whole thing very interesting. I guess if I had to go back and change anything I would ask for the ages in months because converting each one into months individually wasn’t my favorite thing. I learned so much from this project! I read so many different versions of explanations of Rett Syndrome. I learned so much about it and the mutations. I want people to learn that Rett Syndrome affects 1 in every 10,000 girls and it could affect anyone! I want people to know that the girls are in there and they know EVERYTHING we say or do around them! And I want people to know that early diagnosis is the key because therapies can start sooner and that a cure is coming! I think some good advice is if you want to then go for it! Tell everyone you can and talk their ears off about it if they will let you! And don’t be afraid to ask for help or an explanation because some of the scientific stuff can get pretty confusing!

A huge shout out to Kaylie. You’re amazing!!

Feb, 12, 2015

Borg or Oompah Loompah?I often talk to parents and other adults about the NNZ trial, but have never wondered how siblings, those marvelous staunch supporters and protectors of our children might feel.

Here is a link to a wonderful, thought provoking blog post about just that.

http://livingwithrettsyndrome.blogspot.com/2014/11/experimented-on.html

I welcome siblings to comment or email me at m3ml@hotmail.com so I can post their responses to the question….

 

 

How do you feel about your sister or brother participating in clinical drug trials?

***************************

Feb 1, 2015

Sibling contest#1

In wanting to give siblings an outlet where they can openly express their feelings about Rett syndrome, its impact in a myriad of ways, Trail to a Texas Trial is holding the first in a series of contests.

first up- 3-5 year olds!

On a piece of construction paper, using any art form-crayons, paints, glitter glue etc. objects (buttons, Pom poms etc), whatever moves them… Give us the Rett monster!

Take a snapshot and send it to me at m3ml@hotmail.com

Every picture should have the age on it, and children can write just their first name, first name and last initials, or initials only, however the parents feel comfortable. NO full last names, please. One entry per child.

The contest runs through Feb 15.

The judging will be done by our very own Brianna B.!

First place $5 iTunes credit

Second place $4 iTunes credit

Third place $3 iTunes credit

The first 50 children will also get a free code for my book “Tyler and the Spider” on iTunes, inspired by Katelin.

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Today marks the day Trail to A Texas Trial expands! Please meet Brianna B.. She is the newest staff member of our little blog. She will be the Sibling Consultant, my go to girl for all things siblings!

Sibling Sounding Board is a SAFE, NON-JUDGEMENTAL, GET IT OFF YOUR CHEST sort of place. Why? Because Rett syndrome doesn’t just affect the girls and boys that have it or the parents. It affects siblings in whole different ways. So, I welcome the brothers and sisters of kids with Rett syndrome to comment, reach out with ideas, be guest bloggers. You guys know Rett syndrome on a whole different level  than us parents.

Brianna, is sharing her story. Please share yours. You are not alone, whatever your feelings-sad, angry, loving, happy, tired, frustrated. Thanks to Brianna for being brave enough to go first!

My name is Brianna and I am 11 years old . . . although I should say ALMOST 12 since my birthday is the day after Christmas!!  TWELVE YEARS OLD!!  I cannot wait!!  I am in the 6th grade and attend a Performing Arts Academy, take a dance class and I play the tenor saxophone.

I wanted to share my story with you.

My sister, Olivia, was born when I was 3 years old and by the time I was 6 years old she had been diagnosed with something called Rett syndrome and this year she was also diagnosed with having seizures.

My friends know all about my sister and Rett syndrome but they don’t REALLY understand how hard it is for me every single day, they just think that I don’t have enough patience with Olivia and that really frustrates me. When she is screaming ALL THE TIME it’s annoying and sometimes I have to yell at her, it’s those times when my friends say “she is just a baby, you can’t yell at her like that. It’s not fair because she doesn’t understand.” But she ISN’T a baby – she is 8 years old and in 3rd grade, she DOES understand! Rett syndrome has made me very lonely. My mom has said that it’s like being an only child WITH a sibling.  THAT IS CRAZY but so true.

I LOVE my sister so much but I HATE that she cannot play with me, she cannot dance with me, she cannot sit and watch a movie at the theater with me, she cannot play dress up, she cannot play scooters with me . . . there is so much she cannot do and it makes me so sad.

What I love about her is that she loves me so much, she really, really does. When I come home from school she sees me and gets so excited!  I love kissing her and I love making her giggle.  There are times when I don’t see the Rett syndrome and I hold her and twirl with her and we both laugh so hard that we end up with hiccups. I LOVE those times. Those are the times when I don’t feel so lonely, when I feel a little like normal.

Normal? Olivia and Rett syndrome IS my normal and as annoying and frustrating and lonely and sad as it gets me, I wouldn’t want her to be anyone else because then she wouldn’t be HER and I LOVE HER.

-Brianna B.

6 Responses to Sibling Sounding Board

  1. Charna says:

    Brianna B. you are an AMAZING girl!!!!

  2. nana says:

    I am so proud of you. You are awesome young ladyor should I say amazing. I love you

  3. You amaze me, Brianna. Your words are so heartfelt, and I’m so proud of you for having the courage to open up. I truly enjoyed reading your post. It’s very insightful.

  4. Kim Weiss says:

    Brianna
    You are a very brave girl💜
    Sharing your thoughts are going to help you and others going through the same the thing feel comforted.

  5. Amy says:

    I am 47 yr old Rett sibling to a 32 yr old Rett girl. Your words are like medicine to my soul! Keep on girl! I am going to share with my brother and family! Thank you so much!

  6. Michele Borton says:

    I have very similar feelings as a sibling with a sister with Rett Syndrome and she is now 40 but I was always like an only child but with a sister and it is a very sad journey and many others do not understand at all. I know about the yelling as my sister did it for years but it finally stopped and she is quiet now.

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