Family-members, a Crucial Resource
For forældre, plejere, sundhedsplejersker og lærere opstår der ofte bekymringer og spørgsmål vedrørende pleje og velvære for personer med Cornelia de Lange syndrom.
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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