Care Tips

These Videos Allow Families, Supporters, and Healthcare Professionals Worldwide to Have Access to Information that May Not Be Readily Available to Them.


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The goal of this series is to document and capture information that relates to the family experience in all its forms (caring for a child, grief, living with the adult onset forms) and the symptom and care management involved. These videos allow families, supporters, and healthcare professionals worldwide to have access to information that may not be readily available to them in their area. This series aims to help relieve the isolation brought on by these rare diseases.

Topic: Feeding

Feeding Tubes

This video is a comprehensive review of an intervention that can help your child or loved one when swallowing food becomes too difficult. It is a family choice and there is no right or wrong answer when it comes to making a decision for your child. Patricia Beaudry, RN explains G-Tubes: A to Z with Isaac in this video, and we thank her for her time.

Download our companion PDF with the highlights of the video here.

Topic: Movement

Physical Therapy & Range of Motion

These videos show the different ways you can work with your child to keep their muscles relaxed, loose, and not contracted depending on their age. It can also be a wonderful way to connect with your child through movement and touch. It may be helpful to share this with your care team of therapists for them to perhaps learn something new while working with your child.

Our thanks to Haley Snyder, PT, Mollie & Lorelei Sandoval, and Isaac for giving their time to share their knowledge.

Download our companion PDF with the highlights of the Motion & Massage video.

Topic: Equipment

The Vest

This video is a brief description of a form of respiratory therapy that simulates manual percussive therapy to loosen up secretions in the lungs. It is known as The Vest, Airway Clearance Vest, High Frequency Chest Wall Oscillation, and SmartWay Airway Clearance System, and other names depending on the manufacturer. Our thanks to Lorelei Sandoval and Eli for demonstrating how this particular piece of equipment can be so helpful as well as a preventative therapy.