Note: This page is a work in progress
This is a new page that is being built to support your family. We will continue adding information and welcome your input, experience, and feedback. Let us know at Contact@CureSanfilippoFoundation.org.
There are many angles to caring for a child with Sanfilippo
This information and accompanying resources begin exploring the multiple facets of caring for your child with Sanfilippo Syndrome.
Medical
Your child’s pediatrician has likely never encountered Sanfilippo Syndrome before. Share the Foundation’s Physician Handout and/or direct them to the “For Physicians” section of our website for more in-depth information about the disease.
Foundation | Physician Handout & Screening Guide Foundation | “For Physicians” section of website
Your child will require a network of doctors over the course of their life.
Among the projects undertaken by the Foundation is creation of a Global Clinical Management Guidelines, which will allow clinicians and other health-care professionals to make recommendations based on best-available evidence. Additionally, it will enable affected families to make informed decisions regarding care and treatment. Partner families will be notified when the Management Guidelines are completed so they can present them to their medical teams.
Foundation | Global Clinical Management Guidelines (Under Development)
Education
Each child with Sanfilippo Syndrome is different; therefore, has different needs in the educational environment. These needs will also change over time. The best results for your child come from working closely with your child’s teachers, school, and district. Making sure they understand the disease, how it manifests in behaviors and abilities, and what the needs of your child are. Share the Foundation’s informational materials and the resources from other organizations to help with those discussions.Additional Resources
MPS Society | Education of children with Sanfilippo syndrome: A guide for educators Sanfilippo News | Tips for Educators of Children With Sanfilippo Syndrome Article | Navigating IEP Season During COVID and BeyondTherapies
Children with Sanfilippo Syndrome often benefit from different therapies at different points in their lives. Each child’s journey is unique, as is what therapies help them. You are your child’s best advocate to determine what therapies they would benefit from.
THERAPY OPTIONS
Expand each therapy to learn more.
Speech-Language Therapy
To help with maintaining verbal communication.
Physical Therapy
To help build and maintain movement, proper sitting position, walking skills, balance, and flexibility.
Occupational Therapy
To help maintain the use of hands for motions such a self feeding.
Behavior Therapy
To help change potentially self-destructive or unhealthy behaviors.
Nutritional Support
To assist you in ensuring your child is consuming a well-balanced diet that provides consistent nutrition, especially when eating might be a struggle.
Augmentative and Alternative Communication
To help build non-verbal ways of communicating
There is some hesitancy about using AAC devices for children for Sanfilippo Syndrome. This report by Tobii Dynavox combats the myths that an individual can be too impaired to benefit from AAC.
Additional Resources
Emotional Support for You & Siblings
Your wellness is a critical part of creating the best life possible for your child. Review the Foundation’s emotional support resources to help you and siblings navigate life with Sanfilippo Syndrome.
Financial Assistance
MPS Society has multiple assistance programs available, for “during a hard time, a special treat for a family member, or to help make educational dreams come true.” Explore the specific programs offered by MPS Society and review the application.