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Caring for Your Child with Sanfilippo

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There are many aspects 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.

Clinical Care Guidelines for Sanfilippo Syndrome

The first-ever, consensus clinical care guidelines for Sanfilippo Syndrome provide clear guidance on Sanfilippo Syndrome-specific care management and monitoring of disease-related changes, while acknowledging the importance of patient-specific flexibility. They also include which symptoms should be monitored, through which tests, and how frequently.

Additional resources for your physician:

Foundation | Physician Handout & Screening Guide
Foundation | “For Physicians” section of website

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.

Teacher Introduction Worksheet

Each new school year starts with a ramp-up period of your child’s new teacher and support people getting to know them. This Foundation-created worksheet will help your child’s teacher get to know your child’s unique personality faster, hastening their ability to understand and relate to them.

White Paper: Understanding of Special Education and Therapeutic Needs of Children with Neurodegenerative Disorders

This academic publication and white paper provides teachers with a guide for educational priorities and service delivery to children with neurodegenerative disorders.

Therapies

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

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.

The following non-profit organizations offer modest financial assistance, but are not able to help on a long-term basis.

MPS Society

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.