Finding a Cure for Tay-Sachs Disease
 Project Shui for Tay-Sachs

What is Shavuot?                                             




Shui was born on the 5th of Sivan on the Jewish calendar.  This is the day before the Jewish holiday of Shavuot, a two-day holiday in America.  This holiday commemorates the giving of the Torah and all 613 commandments on Mount Sinai.  Below is a brief explanation of the holiday and an essay relating Shui's sister to the holiday of Shavuos.   If you were wondering why we were hosting a party in the middle of the night, it is because of the custom , on the first night of Shavuot, to stay up all night learning Torah.  With the proper refreshments, the kids have a blast.


I hope to update this page soon with a meditative story which takes the reader back to Mount Sinai and the giving of the Commandments. 

       

What is Shavuot?

Re-accept the Torah


The following was copied from the website www.Chabad.org.


Cartoon of Moses holding the ten commandments on Mount Sinai.

The Torah was given by G-d to the Jewish people on Mount Sinai more than 3300 years ago. Every year on the holiday of Shavuot we renew our acceptance of G-d's gift and G-d "re-gives" the Torah.

 

The word Shavuot means "weeks." It marks the completion of the seven week counting period between Passover and Shavuot.

 

The giving of the Torah was a far-reaching spiritual event—one that touched the essence of the Jewish soul for all times. Our Sages have compared it to a wedding between G-d and the Jewish people. Shavuot also means oath and on this day G-d swore eternal devotion to us, and we in turn pledged everlasting loyalty to Him.

 

The holiday of Shavuot is a two-day holiday, beginning at sundown of the 5th of Sivan and lasting until nightfall of the 7th of Sivan.

·       It is customary to stay up all night learning Torah on the first night of Shavuot.

  • All men, women and children should go to the synagogue on the first day of Shavuot to hear the reading of the Ten Commandments.
  • As on other holidays, special meals are eaten, and no "work" may be performed.
  • Many eat dairy foods on Shavuot commemorating the fact that upon receiving the Torah, including the Kosher laws, the Jewish people could not cook meat in their pots which had yet to be rendered Kosher.
  • On the second day of Shavuot, the Yizkor memorial service is recited.
  • Some communities read the Book of Ruth, as King David – whose passing occurred on this day – was a descendant of Ruth the Moabite.

 

From www.Chabad.org >>Jewish Holidays>>Shavuot>>About>>Shavuot 101>>What is Shavuot?

 

link:

http://www.chabad.org/library/article_cdo/aid/609663/jewish/What-is-Shavuot.htm


Return to top


Return to Home Page

Contents
*Video or Pictures of Tay-Sachs

Project Shui Home Page
   *
Welcome From Shui
   What is the Cure Tay-Sachs Foundation?
   How Close are we to a Cure?
   *Rachaeli's Friends
   Sign up for Updates
*Bar Mitzvah Video Invite
What is Project Shui?

  
Thank You From Shui
   Internet Ads&Marketing

What is Shavuot?
  
Shavuot & Shui's Sister

What is Tay-Sachs?
  
Tay-Sachs Diagnosis:

      Part I

      Part II

   Genetics Made Fun
      *Lysosomes The Movie
      *Genetics 101 Video
     
Narrated by Alec Baldwin
   Genetics 101 Article

*Inspirational Videos

  
*Beautiful Faces of Lysosomal
  
*Tay-Sachs Talk
   *Connor Hopf Cure Tay-Sachs
   *2010 Faces of Tay-Sachs
  
*My Soul Sister-Molly Grace
  
*Our Star Dakota
   *Rachaeli's Song of Love
   *Elise-A Child Living with Tay-Sachs
   *Last Laugh
   *Meet Gavin

Tay-Sachs in the Media
   *
Glee Sectionals
   *Grey's Anatomy Sweet Surrender
   *Law & Order SVU MERCY
   *
21 Below Documentary
Legal & Financial Issues

   What is Wrongful Life?
   Right to Live in the United Kingdom
   How to Pay Medical Bills?
   Social Security Disability
   CHIPRA-Insurance for Kids
   Medicaid Waiver Programs
   Katie Beckett Medicaid
   Who is Katie Beckett?
  
Why Do We Need The
     
Katie Beckett Waiver?
  
Eligibility for Katie Beckett
   Katie Beckett in Georgia
  
Katie Beckett's Going Home
   (from People Magazine 1981)

Treatment or Cure
  
Canavan Pioneers
   *Gene Therapy
   Jacob Sheep Sensation
   Article in Forward-Jacob Sheep
   *Stem Cell Transplants
   Enzyme Replacement
   Substrate Inhibitors
   Should I Try Zavesca?
   Letter for Insurance 
      Approval for Zavesca
   Chaperone Therapy

In-Home Medical Care
  
Home Health Care
   Respiratory/Secretions
   Coping Strategies
  
Coping with Humor w/ Shui's Dad
Rachaeli's Story
  
Shocked by Tay-Sachs Article
The Project Shui Family
  
Mommy's Online Journal
   Abba's Online Journal
   Shui's Fun Pages

Guestbook
Sitemap





Return to top

Shavuot and Shui's Sister 

Donate Now button to Cure Tay-Sachs Foundation website www.curetay-sachs.org

Shavuot marks the end of the seven-week period following the holiday of Passover, when we commemorated the Exodus from Egypt.  After numerous miracles, the Jewish people were able to flee Egypt, where they were slaves.

 

The people of Israel were lead by the stuttering, stammering Moshe Rabeinu, better known as Moses. Moses had argued with G-d, asking him to find someone more fit for the job, someone without a speech impediment to whom the Jewish people would listen. 

 

On Shavuot, we received the Ten Commandments and the rest of the Torah on Mount Sinai.  It was a powerful, holy, spiritually intense experience.  G-d had to remind the Jews, through Moses, that they should not come up the mountain past a certain point.  If they did, they would surely die. 

 

But Moses, chosen by G-d despite a speech impediment, could ascend the mountain.  He was able to handle that level of closeness to G-d, that level of spiritual intensity.  He was able to come closer to G-d than anyone else, and it was through him that the words of the Torah were transmitted. 

 

Our relationship with G-d is on a much higher plane than our mundane concerns with external flaws, such as speech impediments.  It is through Moses that we learn that a regular guy, a stuttering, stammering, seemingly imperfect person, can be raised to a level of greatness through their neshama, their soul.  An outwardly flawed individual can have a tremendous impact on other people and on the world.

 

Shui’s sister, Rachaeli, and other children like her, have what most people would consider substantial physical flaws.  Though her outwarRachaeli Fier, a 7-year-old with Tay-Sachs disease, with her father.d appearance is perfect - she’s physically beautiful – she is unable to move her limbs, lift her head, or utter a single word.  If she has saliva in her mouth, she can neither swallow it nor spit it out.  She requires complete care of all her physical needs. 

 

But her neshama, her soul, is flawless.  Unfortunately, this cannot be seen by the naked eye, and so many people look upon her, and us, with pity.  

 

We don’t see her that way.  We see her strength and the strength she gives us.  We recognize her role - her potential - in her life here on earth, and we know her impact could be tremendous.

 

G-d warned and re-warned the people of Israel NOT to ascend the mountain.  He understood that people would surely forfeit their lives to achieve that level of closeness to Him – to be with Him forever.  But G-d wanted us to stay here on earth, where we were placed by Him, to carry out our intended roles.

 

And so with Rachaeli, we believe that G-d wants her here on earth.   We believe that G-d placed her in our care for a reason.  When it is her time to return to Him, He will take her back.  In the meantime, she is here, with her perfect soul, ready to do her intended job. 

 

Return to top


Return to Home Page

 

 

Website Builder