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Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

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Caring for a child with
Tay-Sachs, Sandhoff, GM1 or Canavan Disease

Tay-Sachs, SandhoffGM1 and Canavan diseases are known as progressive neurological genetic disorders. They have common symptoms and approaches for managing day-to-day life. The information in this family support section applies to all 4 of these diseases unless otherwise noted. For details on the disease symptoms and causes, visit The Diseases

Improving the quality of day-to-day life

Learn about the many ways to manage symptoms, making a positive impact on the quality of day-to-day life. The materials in this section describe various symptom management techniques, where to find help, and how to cope. 

 

Newly Diagnosed

Advice for getting organized, finding the right doctor, and learning about resources available to you.

What to Expect

Understand how symptoms change over time. The more you know, the more comfort you can provide.

Symptom Management

Read about feeding and nutrition, seizures, respiratory health, and sensory stimulation

Special Equipment

Practical advise on using strollers, wheelchairs and other equipment.

Services

There are specialists out there. Learn how others may help your family and how to make the most of their services.

Palliative & Hospice Care

The focus of these organizations is on life and living, with the goal to improve the quality of life for the child and the family.

Making Memories

Tips and ideas for day-to-day activities, including meals, support for siblings, and respite care for family members.

Coping

And through it all, you need to take care of yourself and your child's siblings.

Ways to Help

When you want to help, but are not quite sure how or what to give.

Grief

Suggested readings on understanding grief, healing, and remembering.

Preparing for the Unthinkable

Planning for the end stages of the disease.

Complementary Medicine
Tay-Sachs, Sandhoff, GM1, Canavan and related diseases

At an Annual NTSAD Family Conference, families discussed complementary medicine in the Health Management session.  It was a lively and rich discussion that continued in Facebook groups and blogs. Complementary medicine generally refers to using a non-mainstream approach together with conventional doctor care. And the boundaries between complementary and conventional medicine overlap and change with time. For example, guided imagery and massage, both once considered complementary, are used regularly in some hospitals to help with pain management. "Anything that stimulates their senses and takes them away from their bodies or soothes their bodies is awesome and worth a try," said Elaine Martinez, Ezra's mom.

William enjoying a massage.Massage Therapy is one of the oldest healing arts with records dating back 3,000 years with benefits for many symptoms associated with Tay-Sachs and related diseases. 

  • Alynda Lindley became a massage therapist after seeing how much her son Kylee enjoyed massage therapy.
  • Kalah "Williams" Matthews: Massage twice a week was a miracle for her body comfort, made her easier to handle and move. She never needed any kind of pain medication or muscle relaxer.
  • Jack Boyce enjoyed massage from a very early age. Hands and feet and more than anything stomach massage to encourage him to have a bowel movement.
  • Isaac Sandoval usually enjoys a massage. We also do sensory integration prior to encourage alertness using the Walbarger Protocol.

Acupuncture and Acupressure use the same pressure points and meridians but acupuncture uses needles, while acupressure uses gentle to firm finger pressure. Stimulating these pressure points and meridians encourages the body to promote natural healing and improve function.

  • Kalah "Williams" Matthews: Acupressure did an amazing job calming seizure activity.

Music Therapy is an interpersonal process in which the therapist uses music and all of its facets-physical, emotional, mental, social, aesthetic, and spiritual-to help clients to improve or maintain their health and enrich quality of life.

  • William loves his music therapy. We have his music therapist come while he is doing PT as he is so relaxed during music therapy that he works better for his physical therapist.
  • Ezra relaxes listening to the Qur'an. Our holy Qur'an is recited in a very melodic way and it calms him

Isaac floats on back with support from therapist. Mom watches smiling.Water or Aquatic Therapy attempts to promote range of motion and improve overall health through the soothing affects of water. Heated or warmed pools are preferable.

  • Water therapy gets Isaac Sandoval so relaxed and allows him to move more easily.
  • Jacob Jones loves water therapy!

Lilliana horse rides with a therapistHippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes horse movement as part of an integrated intervention program to achieve functional outcomes. The horse provides a dynamic base of support, making it an excellent tool for increasing trunk strength and control, balance, building overall postural strength and endurance, addressing weight bearing, and motor planning.

  • Lilliana has been doing hippotherapy for two years, she is more vocal and it loosens her muscles. And without a doubt she poops after!

Other types of complementary medicine often used by NTSAD families include cranial sacral therapy, vision therapy, chiropractic, Reiki, yoga, aromatherapy, healing touch and more.

Thank you to Jan Marquez, Lorelei Sandoval and Oralea Marquardt for the leading the Complementary Medicine discussion and sharing their experiences incorporating complementary medicine into their child's care routine.

A film for families

 

The trailer is also available on You Tube - Parenting a Child with Life-Limiting Illness 

Host a Screening Party

Increase the awareness of the family experience by hosting a screening of this film. Read more Host a Screening Party

For the Family - Order Your Copy

Complete the Parenting Film - Family Order Form or print Order Form and mail

Professionals

Order online below or print  pdf Professional - Film Order Form (84 KB) and mail

Professionals - Select Quantity

Film Content

This film was produced by National Tay-Sachs & Allied Diseases Association (NTSAD) to lessen the feelings of isolation that newly diagnosed families experience and to give them genuine hope that they will survive. The parents featured are coping with the devastating diagnosis of infantile Tay-Sachs, juvenile Tay-Sachs and GM-1, but the issues they discuss are universal to any life-limiting illness.  Their comments are deeply personal, unaffected, insightful, and courageous as they share the intimate story of how they coped with their child's life-limiting diagnosis, tend their marriage, care for their other children, involve friends, engage palliative and hospice care, and make difficult care choices. Even as the perspectives are varied, two themes are common throughout: the importance of connecting with other families and their certainty as parents of their ability to love and care for their children through the entirety of their lives.

It is this intimate portrait of family experiences, emotions and needs that also make this video valuable as an education tool for providers who support these families, including pediatricians and palliative care doctors.The DVD arrives packaged in the Resource Guide. The DVD includes both the Family version and the slightly shorter Professional version. The Resource Guide features glossary of terms, commonly used special equipment as well as discussion questions for using the video in a professional development setting.

Families and professionals are encouraged to share the film with their communities. Check back in September for resources to help you host a screening.

NTSAD is deeply grateful to Genzyme, a Sanofi Company, for the generous Patient Advocacy Leadership Awards Innovation Grant to support this project.

 

Host a Screening Party!

parenting a child with life threatening illness booklet v2 page 1Caring for a child with a life-limiting illness can feel isolating and even alienating.  And often friends and extended family don't really understand what the family experience is like. This lack of understanding can be a challenge for everyone: for the parents, who want help, support and understanding; for the friends and extended family who want to provide that help and support but don't know how and are afraid of doing or saying the wrong thing.  To help with this, you can host a screening of the NTSAD film, Parenting a Child with Life-Limiting Illness, to give your friends and family a glimpse into your experiences.

Screenings are not intended to be fundraising events but donations are always welcome! The goal of a screening is to spread awareness of the family experience when a child has a terminal diagnosis. Many viewers have said the film helped them to cope and better understand a wide range of issues and health challenges that impact the entire family.
    
Many of the issues and challenges discussed in the film resonated with me and all that I have been dealing with after my husband was diagnosed with Alzheimer's disease.
    
          ~ Volunteer at a Boston screening event

I would have liked to give this film to my extended family, that never seemed to understand what I was going through, and say 'Here, watch this. Then get back to me.'

          ~ Bereaved parent of a child who died from brain tumor.


NTSAD will provide:

  • A copy of the film on DVD with discussion questions
  • Planning guide and personal assistance
  • Informational materials
  • Family Screening Tool-Kit
  • Click   pdf here (429 KB) to download Professional Screening Tool-Kit

Help for Tay-Sachs, Sandhoff, GM1 and Canavan Disease

Someone I love has just been diagnosed with Classic Infantile or Juvenile Tay-Sachs, Sandhoff, GM-1 or Canavan; now what? Take a deep breath and know that you've come to the right place. The day you received the diagnosis might have been the worst day of your life. We understand - you are not alone. NTSAD is dedicated to finding a cure for these diseases & caring for families.

We Can Help You

  • Understand the diagnosis & symptom management options
  • Keep updated on research efforts
  • Connect with other families that truly understand

Getting Started

  • Contact Diana Pangonis, Director of Family Services at This email address is being protected from spambots. You need JavaScript enabled to view it. or 800.906.8723.

  • Read the Newly Diagnosed pages
    Infantile/Juvenile - First Steps -  help getting organized, finding a doctor, and knowing your insurance
    Philosophy of Care - thinking through what's most important
    Free Information Packet - great information on how to manage and cope
    Register for Research

  • Contact Diana anytime with questions, issues, concerns or just to chat. We are here to listen.

Tay-Sachs, Sandhoff, GM1 and Canavan
Family Resources

From managing day-to-day issues to dealing with insurance and service providers, we have assembled much information for families on this website including the best practices and recommendations from other families. These resources can make a positive and loving impact for a child dealing with Tay-Sachs, Sandhoff, GM1 or Canavan disease.

Please use the Infantile & Juvenile Support pages as a reference guide for managing symptoms and finding support.



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