Family-members, a Crucial Resource
Para pais, prestadores de cuidados, prestadores de cuidados de saúde e professores, surgem frequentemente preocupações e questões relativas aos cuidados e bem-estar dos indivíduos com síndrome de Cornelia de Lange (CdLS).
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.
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