Multiple sclerosis in children is not common and the needs of children with MS, their parents and siblings are unique. Multiple sclerosis may affect the entire family, including the ways you communicate with each other, your relationships and daily activities.
Parents have real concerns about their child’s health, education and future. As young children and teenagers are being diagnosed with a disease that was once thought to strike only adults, it is essential that families find support they need and avoid feeling isolated and alone.
The MS Society has expanded its programs and resources to provide services to families in this situation.
Children and Teens with MS: A Network for Families is a support network that provides support and information to families living with a child or teen (18 years and younger) who has been diagnosed with multiple sclerosis. This program is a collaboration between the MS Society of Canada and the National MS Society (NMSS) of the United States.
The Young Persons with MS Network provides written materials for children and their parents about childhood MS.
Mighty Special Kids is an activity book for kids aged 5 to 12 who have multiple sclerosis. The book helps families talk about MS, helps children understand how MS affects their daily life and offers suggestions for discussing MS with friends and schoolmates. The booklet also includes games, interviews with kids who have MS, and family activities. You can also link to the interactive version on the National MS Society’s website. While the booklet is available in English and French, the online version is available only in English.
Managing School Related Issues: Parents of children with MS often report feeling frustrated, overwhelmed or even helpless about how to help their children. The goal of this handbook is to provide you with tips on parenting a child living with MS and offer tools and resources for you to be your child’s best advocate.
» Information and referral
Parents can receive information about MS and local resources from the division or chapter in their area. Call your MS Society division office at 1-800-268-7582 or visit In Your Community to locate the nearest MS Society office. Families can contact us at 1-866-922-6065 to learn more about the Network and other available resources.
Kids Get MS Too – Questions and Answers is an information guide on pediatric multiple sclerosis for parents of children with MS, MS Society staff and volunteers, health professionals and others with an interest in this topic.
» Connecting families
Children and Teens with MS: A Network for Families brings together families who are dealing with similar challenges or concerns through the Internet.
Parents can connect with each other to share concerns, information and support through an email list serve. Please email firstname.lastname@example.org to register with the parents group.
» Summer Camp Adventure
The MS Society offers a week-long camp each summer just for kids and teens with MS. Children and teens come for this incredible camp experience that includes activities like sailing, crafts, theatre, whitewater rafting, an overnight trip and more. The camp is fully accessible, with fun counselors and on site pediatric MS nurses. Campers get to choose which activities to participate in. The emphasis is on having fun together and leaving behind the stresses associated with living with MS.