"Een magisch getal" the story of Sam and his parents


2021 / Saturday, January 23rd, 2021

At the origin of Fondation 101 Génomes, there is the birth of Aurélien, who has a rare form of a rare disease. Since Aurélien's birth and the announcement of his diagnosis, we have already come a long way together. Along the way, we have come across other children with Marfan syndrome and their families. We had the chance to meet Sam and his fantastic parents: Dessie and Laurens. 

Dessie told the story of Sam's adventure on a blog and now in a book just published in the Netherlands. This is their story...

The unpredictability of life and unconditional love for a child

What do you do when you learn that your baby is seriously ill? How do you move on after you learn that your child is unlikely to live beyond the age of two? How can you look forward to the future if there is no future together? How can you move on when you know that life will never be the same again?

"Een magisch getal" is the story of Dessie Lividikou, who, after a trouble-free pregnancy, learns that her son Sam was born with a rare and serious progressive connective tissue disease, Neonatal Marfan Syndrome, and will probably not live beyond the age of two. She and her husband Laurens find themselves immersed in the intricacies of uncertain medicine and are confronted with difficult questions about life and death, grief, fear and uncertainty, but also hope, love and happiness. After a difficult period of mourning, they decide to make the most of their life with Sam. They make a list of all the things they want to do with him and celebrate his birthday every month. In between the many hospital visits and hospitalizations, they try to enjoy the little things together as much as possible.

"Een magisch getal" is a beautiful, touching and hopeful story about the unpredictability of life and how to deal with it.

The book written in Dutch can be ordered on Bol.com in Belgium or to Netherlands.

Part of the proceeds from the sale of the book will fund scientific research on the neonatal form of Marfan syndrome conducted by the Amsterdam UMC..

 

Photo: Copyright Marijn Scheeres

Photo Header: Copyright Anne van Gelder

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