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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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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In-Home Medical Care