Tuesday 7 April 2020 at 14.00 hrs I was ready; defending my thesis from home behind the laptop. The current situation and measures because of Covid-19, made my PhD ceremony completely different than expected.
No Agnietenkapel in Amsterdam (the official ceremonial University Chapel where all PhD's want to be), no public, not sharing this special moment with family, friends, colleagues and other interested parties.
Nevertheless, it was a special moment to defend before the Doctoral Examination Committee my research into behaviour in rare syndromes. Prior to the defense, everything went through my head. The CdLS family days, the world conferences and the contacts during research moments, they are anchored in my memory.
I am grateful for the meetings with your children and you as parents and caregivers. It was a very special experience for me to get a glimpse into your (family) life. I have a lot of appreciation and respect for the dedication, commitment and enthusiasm with which the quality of life of your children, who are vulnerable and powerful at the same time, is safeguarded and, where possible, strengthened.
Your personal stories, knowledge and skills have taught me a lot.
In my dissertation I emphasize, partly reflected in the layout, the individuality of each person with CdLS. It is very important that we do not forget to look at the development and behaviour and the environment in which it takes place on an individual level. The research shows once again that CdLS has a great diversity, also (or perhaps you) when it comes to development and behaviour. The way of communicating, making contact and observing the world around him/her differs greatly from person to person.
Together with Sylvia Huisman we have seen and underlined the importance of interdisciplinary cooperation, looking carefully, working together (parents, carers and professionals from different disciplines) and providing personalised care, support and treatment.
I hope to continue to meet and contribute to the deepening and broadening of knowledge about CdLS. Together we can guarantee (in small steps) the quality of life of your children and where possible increase it.
Kind regards,
Paul Mulder