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.
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.
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.
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.
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 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.
The following non-profit organizations offer modest financial assistance, but are not able to help on a long-term basis.
Caring for a loved one demands significant amounts of time, attention, patience and dedication. NORD’s Respite Program provides financial assistance to enable caregivers a break to attend a conference or event or to simply have an afternoon or evening away from caregiving.
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.
The Transportation Security Administration (TSA) has a program, TSA Cares, to assist travelers with disabilities and medical conditions. Through TSA Cares, a traveler may request the services of a TSA Passenger Support Specialist (PSS), who can provide assistance through security screening. A PSS is a TSA officer who has received specialized training, including how to effectively assist and communicate with individuals with disabilities or medical conditions; and travelers who need additional screening assistance.
Angel Flight NE
For many patients, the journey back to health is a long process requiring multiple flights to specialty medical treatments. While medical care is available, the cost of frequent travel to medical appointments creates a barrier to accessing the care these patients deserve. Angel Flight NE provides free angel flights and ground transportation so children and adults can access life-saving medical care.