International Rare Disease Day: the policy of the 1st child who saves the 2nd is intolerable.

ELA International warns of the importance of screening for leukodystrophies at birth.

Diagnosed too late, Alice lost her speech and mobility in less than a month. As a result of this cataclysm, her little sister Coline was screened very early, even before the first symptoms of the disease appeared. That’s what changed everything for her. Coline was saved thanks to an innovative treatment.

It’s the same story for Mathieu and his little sister Eléonore, for Nathanaël and his little brother Augustin, and for many others… It’s been going on for several years and could go on for a long time if we don’t say STOP! As if this sacrifice of our eldest children were inevitable.

Yet all these children could have been saved, because an effective treatment exists, provided it is administered very early, even before the first symptoms appear. And this is possible as long as all babies are screened at birth. Some countries have already introduced such screening. It enables children at risk of developing leukodystrophy to be identified and monitored. The cost of the test is derisory (less than €1/test) given the seriousness of the disease and the enormous impact on the whole family.

 

In its referenced opinion of January 2024, ELA International’s ethics committee, made up of experts from all walks of life, said it was very much in favour of newborn screening for leukodystrophies that can benefit from treatment.

We still have to convince the health authorities that our demand is well-founded. Needless to say, the families of ELA International are determined to achieve widespread screening for leukodystrophies, and to finally put an end to the unbearable fatality of the 1st child saving the 2nd.

Sharing is already Helping. Thank you for your support.