He has Apert syndrome and defied science
- Doctors predict a very poor quality of life for people with this condition, but it has overcome the bad omens.
“I was born with a condition called Apert syndrome, which causes abnormalities of the skull, hands and feet.” Leah has Apert syndrome and she defies science.
“They say that in most cases when we’re born we won’t live a month,” but she, 23, has beaten all odds and now wants to challenge medicine.
“Doctors report that with our syndrome in particular, the quality of life is very poor, but I live well, I am happy, I can study and have friends,” says Lya Castro Rodríguez, advocate for Apert boys.
“In our case, the skull is fused, and this makes the brain unable to grow, it has no space, and surgery is required before the age of one year is reached. Physically, we will always be different,” he explains.
Leah is studying class 8 of the medical profession with one goal: “My dream is to be a geneticist to train the new generations of doctors to come, doctors who are already practicing and to tell them that people with rare genetic conditions are lost, we are valuable.”
She is the leader of a group called Apert México, where they not only support each other but also want to break any kind of paradigm that exists around them. They have shown great results and are well on their way to achieving what they set out to do.
This syndrome is so rare that for every 160,000 Indigenous people alive, one has it worldwide. In Mexico, there are approximately 500 cases of Apert syndrome, and the longest-lived person has been recorded to have lived to 70 years.
said Leah, who has been in contact with 150 people like her who she calls the Young Brothers and together they strive to be included in a community that does not yet fully understand this requirement.