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Medical Considerations

As you care for your child, you will encounter many medical complications and clinician specialists. Here you will find information about the most common complications and how they relate to your child’s underlying neurological condition. It will introduce the teams involved in caring for your child, and what you can expect as your child’s caregiver and advocate.

Each child is unique and you may find yourself encountering medical complications earlier or later in the arc of your child’s life.

Download the caregiver worksheet

Adapting to Diagnosis

Collecting information, care and support as issues emerge for your child and your journey begins.

Building Strengths

Maximizing your child’s core skills and family resiliency to develop a foundation for the journey.

Adjusting to Changes

Making decisions and adapting to your child’s evolving baseline throughout the journey.

Navigating Decline

Re-orienting goals and finding support alongside declines in your child’s condition, preparing you for the end of your child’s journey.