Parents of Children with MS
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 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. Below are the resources available:
The Young Persons with MS Network provides written materials for children and their parents about childhood MS.
Kids Get MS Too: A Guide for Parents Whose Child or Teen has MS is a handbook containing articles on a variety of topics written by specialists in childhood MS, and includes resources and information to further guide parents with regards to more specific topics.
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 about the division or chapter in their area. Call an MS Navigator at 1-844-859-6789.
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.
Pediatric MS Online Group for Parents connects parents through an online group where parents can share concerns and information. Please visit msconnection.org to register and then search Pediatric MS Online Group to get started.
Summer Camp Adventure
The MS Society offers a week-long camp each summer 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. The emphasis is on having fun together and leaving behind the stresses associated with living with MS.
For more information, or to see photos from previous summers visit the Summer Camp page on our website.
Paediatric MS Clinic
For more information visit The Hospital for Sick Children - The Paediatric