Shui's Biography

Hi. My name is Shui. I’m the second kid in this family. I was born in 1997, 5 ½ years before my baby sister, Rachaeli. My real name is Joshua, but everyone calls me “Shui”.

My favorite things are baseball, soccer, swimming, and basketball. I’m probably best at baseball. One day, I’d like to pitch. I also enjoy Lego, Harry Potter, and telling jokes. Rachaeli sometimes laughs, just not at my jokes…

My favorite vacation was going to Sanibel Island, just me and my dad. We saw dolphins and found really cool seashells and jellyfish. I would like to take Rachaeli there one day -- just me, her, and my dad.

Interview with Shui

Q: My sister is special to me because:
A: She’s very cute and I love her very much.

Q: Some things that Rachaeli can’t do are:
A: She can’t really eat food or walk or talk.

Q: Some things that Rachaeli can do are:
A: She can stretch her arms out to play with us; we like that very much.

Q: One thing I sometimes do to try to make Rachaeli happy is:
A: I love to giggle with her and give her lots of love and kisses.

Q: One wish I have for Rachaeli is:
A: That she can live for a long life.

Q: When I daven [pray] for Rachaeli, I ask Hashem [God] to:
A: Make a miracle for Rachaeli.

Q: If Rachaeli didn’t have Tay-Sachs, one thing I would do with her is:
A: When she would turn 3, I would teach her how to throw a Frisbee.

Q: For Rachaeli, the most difficult part about having Tay-Sachs probably is:
A: That we can’t take walks together or talk together.

Q: I will always love my sister because:
A: She’s my little sister and I love her. She won’t live a very long life.

Q: If Rachaeli could talk, I bet she would say:
A: I think you’re a great brother!

Q: If Rachaeli could understand what I say, I would tell her:
A: I love you very much and I hope you love me too.

Q: One day, when I meet Rachaeli in heaven, I will:
A: Respect her.

Q: The hardest part, for me, about having a sister with Tay Sachs is:
A: That I can’t talk with her and hold her hand while we walk.

Shui, age 7, (7/11/04)