Dysautonomia Foundation, Inc.

Family Matters
Winter 2003

 

 
 

 

Samantha Myers Dedicates Bat Mitzvah to Foundation


Samantha Myers at her Bat Mitzvah with Rabbi Chava Koster

The following is an excerpt from the speech Samantha Myers gave at her Bat Mitzvah this past summer.  We want to thank Samantha for her gift and her lovely words.

“My Torah Portion is Devarim which is the beginning of the fifth book of the Bible.  Moses and the Israelites are at the River Jordan.  They have been wandering in the desert for forty years since they left Egypt.  God has told Moses that the Jews who were slaves would not be able to enter the Promised Land, except for Caleb and Joshua.  This was because they lost faith in God when they built the golden calf.  God also told Moses that he too could not enter the Promised Land.

“In this section, Moses is reminding the Jews of everything that happened when they were wandering in the desert, especially all the things they did wrong, and all the battles that they fought.  I think he is doing that because he knows he is about to die and he wants to be sure that all the Jews will obey and respect God after he passes away.  Moses has taken care of them for forty years and he is worried about them and their future when he won’t be there.  They are like his children.  And you know how parents are.  Sometimes they yell because they love you.

“My connection with the Torah portion is very personal.  I have a lot of challenges in my life.  I was born with a Jewish genetic disorder called Familial Dysautonomia, or FD for short.  I have to deal with a lot of medical issues every day.  For me, that is like wandering in the desert.  I also have a dream of my own Promised Land, a world with a cure for FD.  That helps me get through all the tough times, just like the idea of the Promised Land did for Moses and the Jews.  I think that almost everyone has difficult times, but if they have dreams about how to make the world better, it makes a big difference.  And I think that even though Moses didn’t get to the Promised Land, his dream was fulfilled because he helped the next generation there to live in freedom.

“So, to help make my dream come true, I have dedicated my Bat Mitzvah to raising money for the Familial [sic] Dysautonomia Foundation to help support medical research for kids with FD.  I hope that it will help scientists find a cure, or at least ways to make life easier, for me and all the other kids with FD.  But no matter what happens, it makes me feel really great that I can make a difference, even if I don’t get to the Promised Land.”

*Parents, FD children, and FD adults are welcome to submit pieces such as the Bat Mitzvah dedication above, including achievements, congratulations, thanks, poetry, artwork, and hopeful anecdotes.  Please contact the Foundation at 212-949-6644, or Fd212dys@aol.com.

     

 

copyright (c) 2004 Dysautonomia Foundation, Inc.                                        last modified 8/6/04