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.
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.
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.
EducationEach 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 ResourcesMPS 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 Beyond
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.
Expand each therapy to learn more.
To help with maintaining verbal communication.
To help build and maintain movement, proper sitting position, walking skills, balance, and flexibility.
To help maintain the use of hands for motions such a self feeding.
To help change potentially self-destructive or unhealthy behaviors.
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.
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.
State and federal programs
First, assess all state and federal benefits that are accessed based on your child’s diagnosis, such as Medicaid, TEFRA qualification, Medicaid Waiver programs, and SSI Disability qualification. Your pediatrician may be your best source for what state programs are available.
There following non-profit organizations offer modest financial assistance, but are not able to help on a long-term basis.
Isabel Jurado Foundation
The Isabel Jurado Foundation’s MPS Family Support Fund provides funding for home modifications, medical supplies/equipment, respite care, and other services/items needed to ease the financial and emotional burden of caring for a Sanfilippo Syndrome or any other MPS child while improving the quality of life for the entire family. IJF does not provide funding for medical supplies/equipment already covered or paid for by insurance or Medicaid.
MPS Society has multiple family support programs that provide financial assistance for a range of things, such as conference scholarships, bereavement expenses, extraordinary experiences, equipment or medical aids, and travel. Explore the specific programs offered by MPS Society and review the application.