Margot, a girl who was born without ears, eardrums or ear canals and fought against a rare disease

Margot, a girl who was born without ears, passed away on February 23. Now, in the framework of Rare Disease Day , which is celebrated on February 28, her parents are seeking to raise awareness and make visible the syndrome she suffered from.

The girl had no ears, ear canals or eardrums due to mandibulofacial dysostosis-microcephaly. She also suffered from Pierre Robin syndrome , a condition that impacts the development of the head and neck.

This congenital anomaly is characterized by a reduced lower jaw, which causes the tongue to move backward and cause breathing difficulties.

"Our world has stopped, leaving a huge void, a pain that nothing can fill. How do you find the words when your heart is broken? How do you write the unimaginable?" her parents wrote on Facebook.

Margot's parents run a page on Meta's social network called 'Des oreilles pour Margot' (Two ears for Margot, in English). They were trying to raise funds for a surgical reconstruction surgery in the United States.

They managed to raise 55,000 euros of the 200,000 euros needed. However, after the girl's death, cybercriminals have tried to take advantage of the situation with fake campaigns.

"Friends, be careful. There are fake accounts circulating. Not everyone has the meaning of respect. We will never ask you for your bank details," Margot's parents warned.

This rare genetic disorder that Margot had causes abnormalities in the head and face. According to MedlinePlus, people with this syndrome often have small heads that don't grow at the same rate as the rest of the body.

Some of the abnormalities it causes often include underdevelopment of the middle of the face and cheekbones and an unusually small lower jaw.

In addition, as in Margot's case, some people may also have abnormalities in the ear canal , especially in the ossicles or semicircular canals. These ear defects usually cause hearing loss in the majority of affected individuals.

DIGITAL REACH EDITORIAL