Family-members, a Crucial Resource
For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Cornelia de Lange syndrome.
If you have children, you likely identify yourself first and foremost as a parent. If you are a brother or sister it is important to enjoy being part of your family.
Being a family-member is an all‐consuming, extremely tiring, always exciting, tremendously stressful, potentially thankless but incredibly rewarding job.
Being a family-member of a child with a number of medical and/or developmental complications; there are additional responsibilities, stresses and rewards.
But it does also put's a burden on yourself, your ambitions.
