Why do you support the 101 Marfan Genomes Project?

My name is Dessie Lividikou and I am Sam's MOM. When he was born on September 24, 2017, we learned that Sam was suffering from neonatal Marfan syndrome. A serious progressive dysfunction of connective tissues. Doctors have told us that most children with neonatal Marfan syndrome do not survive for more than two years.

We started a blog on Sam (lievesam.weebly.com) and through our blog, we came into contact with Romain and Ludivine and the Fondation 101 Génomes . They do a fantastic job and we wholeheartedly support the project 101 genomes Marfan. There is currently no treatment for Marfan syndrome, hence the importance of good research.

Through our blog, we have met other parents of children with neonatal Marfan syndrome who are much more than two years old. We also found that there are great differences in the way the disease manifests itself and in the symptoms that children suffer.

The project 101 genomes Marfan wants to study these differences and try to explain them. With this project, we hope to develop treatments that can be vital for Sam, Aurélien and other children with Marfan syndrome.

Sam underwent his first cardiac surgery this summer. The future remains uncertain and exciting. We hope that medical research will continue to develop and we believe that this project can make an important contribution.