Welcome to the EXTRASORDINARY Interview Series
This blog is a place to introduce you to extraordinary RASopathies patients, families, scientists, researchers, and clinicians! Be sure to scroll through to the bottom to read past entries.
March 14, 2018 – The Bailey Family
What is your name?
How old are you?
Where do you live?
What are your favorite things to do?
Sports and hang out with my family
What’s your favorite food?
Tacos and ice cream
What do you want to be/do when you are older?
Something to do with sports
Who do you live with?
Mom, Dad, brother Shane, dog, Annie
Who in your family has one of the RASopathies?
My brother Shane
Which RASopathy does your sibling have?
What characteristics best describe your brother?
Shane is very funny, very structured, always happy and curious, loves to explore, super cute, and the most amazing brother ever.
What do you love most about your brother?
I love everything about him. I can’t pick just one thing.
What is the hardest thing about having a brother with a RASopathy?
Shane’s needs. It is really hard because his needs always come before mine. If Shane is sick, it sometimes seems like it is a lot bigger deal than when I am sick so that sometimes worries me. Most of the time I am okay with it but sometimes it a really hard.
What is the best thing about having a brother with a RASopathy?
Its different and its better. It’s a better “different”. Shane is always there for me. No matter what, he is always waiting to give me a hug or a kiss or just hang out with me. It is the best thing ever.
If you had a magic wand and could change something for your brother, what would it be?
I would make it so that he didn’t have any more surgeries and things would be easier for him. He is almost always happy and when he has to have surgery or be in the hospital, it is really sad to me. He is really strong though.
If you had a million dollars to give away, who or what would you give it to?
RASopathies Net for research to help make people’s lives better.
Do you have any advice for other siblings of RASopathy kids?
Be proud of your brother or sister with a disability. Instead think of it as you are more special because you have this sibling in your life.
What do you want people to know about your brother?
I want people to know everything – what he has and how hard life is for him sometimes. I want people to understand all about him because I don’t like when people look at him in a different way because he is just a person; just an awesome person.
What one word would you use to describe your brother?