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Family Support - Local Resources

In North Carolina, numerous resources exist to help families support their loved ones. Families often face challenges as they start on their journey with a child with medical complexity, and these state resources can help.

Please contact the Pediatric Enhanced Care Program for information about additional support specific to your area, such as financial and transportation resources through your local Department of Social Services or contacts for your local school system.

Patient and Family Support

Family Support Network of North Carolina www.fsnnc.org provides support for families of children with complex medical needs.  The Family Support Network provides one-on-one parent matches with a trained support parent for emotional support, assistance in finding community resources, and sharing parenting experience.

Attend one of the Family Support Network’s Chat and Snack nights while your child is in the hospital. If you do not live in the greater Forsyth County area they will be happy to refer you to your local Family Support Network.  Sometimes another parent can provide the best support.

First in Families of North Carolina www.fifnc.org supports people with developmental disabilities and their families. Support may be financial or connecting an individual to vocational, social, and educational opportunities in the community. Call 919-251-8368 for contact information on your local chapter

Exceptional Children’s Assistance Center (ECAC) is a private non-profit parent organization committed to improving the lives and education of all children with a special emphasis on children with disabilities. Services include help with special education and IEPs, early childhood issues, technical assistance for parents, online learning, parents’ rights & other laws, resolving disagreements, parent to parent support, and other resources. www.ecac-parentcenter.org 1-800-962-6817   (Español)   

Advocacy Organizations

Special Needs Resource Project has compiled an extensive list of resources available for people with special needs: www.snrproject.com/Resource/Links/North%20Carolina 

Disability Rights North Carolina provides information and advocates for people with disabilities: www.disabilityrightsnc.org

NC Assistive Technology Program works to promote independence for people with disabilities through advocacy efforts regarding assistive technologies: www.ncatp.org

Online Resources

You can find support through these online resources for families of children with complex medical needs.

Complex Child E-Magazine offers online support in the form of articles written by parents of children with complex medical conditions: www.complexchild.com

The Courageous Parents Network offers support to families of children with complex medical needs in the form of a blog, informational videos, and community support: courageousparentsnetwork.org

Partnership for Parents offers great articles that answer questions that you might wonder about, whether your child has just been diagnosed or is further along in his/her treatment journey. partnershipforparents.net

Family Voices is an organization working to improve health care for children with special health care needs. Their website includes resources on caring for your child, advocacy, and parenting. www.familyvoices.org/index_html

Caring Bridge is a resource that many families use to share their story. The posts can be made private and can be used by families to share their child’s journey with family and friends who want to offer support: www.caringbridge.org

Aaron’s Tracheostomy Page is an educational and support website started by the family of Aaron, who had a tracheostomy for the first 4 years of life: www.tracheostomy.com

Tubie Friends is the website for the non-profit manufacturer of Tubie Friends, or stuffed animals with medical interventions similar to those experienced by the child. The toy acts as a comfort to the child and makes the process less frightening. www.tubiefriends.com

Recreation

Below is a list of agencies that provide recreation activities for children with complex medical needs and their families.

Please note that there may be more recreation activities available in your community such as sports, dance, or equine therapy. Please contact us if you would like more information about local recreation opportunities.

Camps

Sending your child with special needs to camp for the first time can be exciting, but overwhelming. Tips on how to prepare yourself and your child can be found here: www.brennerchildrens.org/KidsHealth/Parents/Cerebral-Palsy-Center/Daily-Life/Camps-for-Kids-With-Special-Needs.htm?__t=588

Some of the regional camps that serve children with special needs are listed below:

Victory Junction Camp, in Randleman, North Carolina offers a camp experience for children with chronic and/or serious illnesses at no cost to families: victoryjunction.org

Camp Carefree, in Stokesdale, North Carolina, offers camp for children with serious illness at no cost to families: www.campcarefree.org

Camp New Hope is near Boone, North Carolina, and serves families of children with life-threatening medical conditions. This non-profit camp provides food, activities, and lodging for the family, at no charge. campnewhopenc.com

Camp Holiday Trails, near Charlottesville, VA, serves children with serious illness and their families: www.campholidaytrails.org

The Muscular Dystrophy Association offers a one-week camp for children with neuromuscular diseases, with locations across the country: www.mda.org/services/mda-summer-camp

Wishes

The following organizations offer opportunities for children who face serious medical conditions to have a wish granted. Please note that each organization has eligibility requirements and varying options for wishes.

Make-A-Wish: nc.wish.org

United Special Sportsman Alliance: childswish.org

Children’s Wish Foundation International: childrenswish.org/about

Dream Factory of North Carolina: dreamfactoryincncg.org

Kids Wish Network: kidswishnetwork.org

Marty Lyons Foundation: www.martylyonsfoundation.org