Thursday, April 6, 2017

Siblings in the Spotlight

We love our Rett siblings! Today, we'd like to introduce you to Hayden, sister to Rett Girl, Harper!

  1. What's your name?   Hayden
  2. How old are you?   6 years old
  3. How old is Harper?  3 years old
  4. What grade are you in?  1st
  5. What's your favorite subject in school?
    I think art and math.
  6. What do you want to be when you grow up? I want to be a horse trainer

7.  Do you feel like your life is a lot different from your friends? Yes I do. Many of my friends have siblings who don't have Rett Syndrome. Harper is way different. She can't climb in my club house or run with me or talk to me at night in our bedroom.
8.  Your parents probably have to spend a lot of extra time with Harper (doctor appts, and hospitals) do you get jealous, or how does it make you feel?  It makes me feel sad that she has to go everywhere that she doesn't want to go to.  She would rather go to school and make friends and learn how to walk and talk with other people.
9.  Can you explain (in your words) what Rett Syndrome means to you?  Rett Syndrome means to me...  it's... it's... when I feel like someone has Rett Syndrome they are sick and I worry. If they are sad or uncomfortable I worry that something bad is going to happen. Rett syndrome is painful and it hurts and it makes you go to the hospital a lot and go to the ER.
10.  If you could cure Rett Syndrome by giving up something, what would you give up?  I would give up ANYTHING to help her get better so she could go outside and have fun and play and be free from doctors and medication stuff.
11.  If you could ask Harper one question right now, from you, what would you ask?  I would ask her if she wants my attention or if she needs me more. If she wants something from me I'll give it to her. 

12.  Do you participate in any fundraising for Rett Syndrome you would like to tell everyone about? I am planning on going to Disney next year to run the marathon.
13.  Can you tell me a sad or frustrating time you experienced with Rett Syndrome? I don't like when she is screaming, yelling and sad and I can't fix it. She can't blow out her birthday candles. I have to do it for her.
14.  What about a positive experience?  I drove her around in a Power Wheels Jeep and she laughed so much and I really liked that. 


15.  Do you like talking to people about Harper and explaining Rett Syndrome?  Not really. It makes me uncomfortable.
16.  What is your favorite thing to do? I like to practice gymnastics and dance.
17.  What's your favorite thing to do with your friends?  I love roller skating and riding my bicycle

 18.  Do you have a favorite sport?  Yes! Florida Gators Gymnastics!

19.  What is your favorite thing to do with Harper? 
I like to make her laugh by talking silly or acting like I am burping. She thinks that's funny!

20.  What would you like everyone to know about Harper?  She is smart and very funny! If she is crying I sing to her. She likes "If you're happy and you know it". She LOVES Toy Story. 

21.  Last question, what is one thing that not many people know about you?  I take a lot of my time to figure out what makes Harper happy. 

Attention Rett Siblings:

If you would like to share with us, please answer the above questions and email

If you would be interested in emailing or writing letters to other kids around your age with siblings with Rett Syndrome and getting to know some other kids like you, please let us know! We would love to help you make new friends and maybe you can help each other with all kinds of different things! Email