Project Shui for Tay-Sachs

In-Home Medical Care

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






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Rachaeli Fier on a Donate Now button for the Cure Tay-Sachs Foundation website www.curetay-sachs.org



Shui and Rachaeli's mother has 6 1/2 years of experience in in-home medical care for a child with Tay-Sachs disease.  This page will review the medical issues, by system, that children with Tay-Sachs and other severe brain disorders have.  The issues involve the neurological, gastrointestinal, respiratory, urological, endocrine, dermatologic, and musculoskeletal systems.  The psychiatric impact on the family will also be discussed, as will social services and support, application for state supported insurance (Medicaid), application for the Katie-Beckett waiver (deeming waiver), private insurance issues, qualification for in-home nursing care, adaptive equipment, and physical and occupational therapy.  Obstacles and how to tackle them will be presented.

This page is still under construction, so check back with us for updates.

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