At the origin
of the 101 Genomes Foundation was the birth of Aurélien, who suffered from a rare form of a rare disease. Since Aurelien’s birth and the announcement of his diagnosis, we’ve already come a long way together. Along the way, we met other children with Marfan syndrome and their families. We had the chance to meet Sam and his fantastic parents: Dessie and Laurens.
Dessie has chronicled Sam’s adventure in a blog and now in a book that has just been published in the Netherlands. This is their story…
Life’s unpredictability 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 learning that your child probably won’t live past the age of two? How can you look to the future if there’s no future together? How do you move forward 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 is unlikely to live beyond the age of two. With her husband Laurens, she finds herself plunged into the twists and turns of uncertain medicine, and 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. Between the numerous 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 cope with it.
The book, written in Dutch, can be ordered from Bol.com in Belgium or from Netherlands.
Part of the proceeds from the sale of the book will fund scientific research into the neonatal form of Marfan syndrome carried out by the Amsterdam UMC.
Photo: Copyright Marijn Scheeres
Photo header: Copyright Anne van Gelder
