Jeronimo Gianera

By Jorgelina Lores

Seven years ago, our twin boys, Benjamin and Jeronimo, were born. When they turned six months old, Benjamin’s teeth came out, one after the other, in the order expected by doctors. But that did not happen with Jerónimo. When he was 13 months old, he got his two first teeth, pointed and sharp.

Neither family nor doctors knew anything about ectodermal dysplasia. So, we were not diagnosed with it until he turned three years old, when we were sent to Garraham Hospital in Buenos Aires.

The shock was tremendous. I cried and cried and asked myself, “why?”

I felt terribly sad and thought that Jerónimo was going to have a difficult life, that he was going to suffer. I felt terrible with that idea. Moreover, doctors suggested us not to have another baby. But, it was late. I was already expecting my third child.

Ignacio as a toddler. He also has ectodermal dysplasia.
Ignacio is the youngest. He, too, has ectodermal dysplasia.

Understanding My Purpose

Fortunately, I am an English teacher, so I did a lot of research and could find and read a lot of information. Everything was in English, and I studied and learned a lot about ectodermal dysplasias.

I realized that having a son with this condition was THE challange for my life. Helping him to have the best possible life was my only purpose. So I stopped crying. I got into action.

Getting Jeronimo Teeth

I went to eight different dentists in Mar del Plata, our hometown, who did not accept him as a patient. They said, “He is too young,” “We do not have the knowledge,” or “We do not know what to do.” Some months later, I met Mariana Fernández Rubio, a great dentist and person, who was willing to help us and still does every time we need it.

The process was very long. First, we had to motivate Jeronimo to go to the dentist, to open his mouth, and not to be afraid. He did everything right. We are so proud of him. It seems to me that he knew that all this process, though complex, was necessary. He never complained. He was (and still is) a happy boy.

So, when he turned three years and a half, he got his first dentures. He accepted them, used them and took care of them.

Jorgelina stands with her three sons.
Here I am with my three boys: Jeronimo, Ignacio and Benjamin.

A New Attitude

Jerónimo became our teacher, showing that sometimes our beliefs about something limits our actions. Being afraid or worried is natural, but these feelings should not stop us from learning.

What is more, Jeronimo became the best teacher for his younger brother, Ignacio, who was born four years ago, also with ectodermal dysplasia. They form a great team. We as a family are a great team.

We are all learning that, in the end, knowing and living with ectodermal dysplasia is the best that could happen to us, since we became stronger, closer, and more grateful than ever before. It is all a matter of attitude.

Jorgelina Lores is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives in Argentina with her family

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5 comments on “Jeronimo, Our Teacher”

  1. 1
    Beatriz on May 8, 2019

    GOD Bless you and your family Jorgelina , all of you are an example for many families .

  2. 2
    Charlotte Proffitt on May 8, 2019

    God bless you, Jorgelina and you family
    Beautiful boys, my name is Charlotte I have a grandson and great grandson with Ectodermal Dysplasia, my other great grandson does not have the gene.

  3. 3
    María Paz Pardiñas on May 11, 2019

    Jorgelina My dear friend! Incredible mum, inconditional friend, great teacher, strong woman, positive energy. I can only say by reading your lines I SO PROUD OF YOU AND YOUR BABIES, YPIR FAMILY 💗🥰WE LOVE YOU ALL.

    1. 4
      Jodi Edgar Reinhardt on May 13, 2019

      Hi, Maria. It’s wonderful that Jorgelina has the support of people like you in her life. ~ Jodi, NFED, Director, Marketing and Communication

  4. 5
    Millie Bernigaud on February 27, 2021

    Strong and super mom, Jor! I could see her some years ago facing the news of Jero’s diagnose with all the feelings only a mom can feel and always full of love and support (and being pregnant of Nachito!). Many of us should learn many things from you guys! XXXX

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