What life lessons or advice is important to pass on to children and young adults living with a rare disease?
What can parents and caregivers do to help set their children up for success as they grow up? What has been helpful in your family?
You are never too young to self-advocate. Find resources that you and your family learn how to grow this great skill.
such a great question! The two things that stood out to me as a rare disease child is that it helps for not just the child but also the family to attend counseling - individually and family counseling as it affects everyone and their relationships with one another. Additionally, teaching a child how to become a self-advocate is important I think, my mom taught me how to advocate for myself and I've found that invaluable for my care and quality of life.
