Bereavement

        Per i genitori, gli assistenti, i fornitori di assistenza sanitaria e gli insegnanti, sorgono spesso preoccupazioni e domande riguardanti la cura e il benessere degli individui con sindrome di Cornelia de Lange. 

“As with his birth and at different times during his life, Michael’s death and all related aspects threw our family onto an emotional rollercoaster. Although naturally shy, I had found the best way to cope was to try to be brave and seek support. The end was no different. Simply sharing the events as they unfolded by phone or email brought strength and guidance from family, friends and especially the online CdLS communities.”

_{Excerpt from When Angels Take Flight: The Loss of a Loved One with Cornelia de Lange Syndrome}

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