What It Was Like to Grow Up With Spondyloepimetaphyseal Dysplasia Strudwick Type

I arrived to the world on May 29, 1996 at 8:45 a.m. by means of a caesarean section programmed in advance by the doctor in charge of my birth and the welfare of my mother.

My mother always says what was most curious about my birth was that I kept my eyes open and watched everything around me. The impact of seeing my eyes so awake and anxious to know the world made her faint and not wake up until everything was over.

At five months of pregnancy on a routine ultrasound, my mother was informed that because my bones were not growing at the same level as a baby with the same gestation time I had a high probability of having skeletal dysplasia, which resulted in dwarfism. Until I was born I came with a condition called achondroplasia, which is one of the most common types of dwarfism. This term was not very unknown by my family since we had two members with it, but it was not until my birth when we learned my real diagnosis, a surprise for both doctors and my family. I’d been born with very unusual skeletal dysplasia called “spondyloepimetaphyseal dysplasia Strudwick type.”

What was even more disheartening was the fact that the doctors who were empowered to be the bearers of tranquility in this type of situation could only say to my mother and our family, based on my delicate state of health, “Pray for her baby, she does not have much hope for life.” Apparently they did not know that while they said that I was taking small steps towards thriving, thanks to the immense love, support and constancy of my family that insisted I would get out of that state in which I was and could surf all adversities to be presented to me in the future. (They were right, but I will tell you later).

An example of that immense love was the fact that my grandmother could recognize me even without knowing me. According to what she proudly always tells me, she was in the waiting room talking to another lady who was waiting, when she saw a baby with a serious cry in an incubator, and she instinctively said, “She is my granddaughter” and was not in the wrong. I was in that incubator when I was led to the neonatology unit.

My life was like a roller coaster. There were good days in which my health was stable. There were days when it decayed like in the first months of my life. There were comings and goings to the hospital, short hospitalizations, some very long. My mother enjoyed every little moment in which we could be together without any medical device or connected to some machine in charge to check and keep my vital signs stable.

When I turned 5 or 6, I do not remember very well, I began to realize I was shorter than the rest of my friends and cousins, who by then were much younger than me.

I noticed the commercials of milk in which they said, “Milk makes you grow …” I very innocently took a lot of milk, thinking that would make me grow and be the same size as other children my age, but what I did not know was that it would only help me strengthen my bones.

My growth simulated an hourglass, going from granite to granite. One day I asked my mom why I was so small, and she had no problem telling me in words that a girl my age understood was what I really had and because I have always been characterized by having a great maturity, I took it super well.

I continued my partially normal life because in my family I was always seen with complete normality, never with any special treatment.

In my nearby center there was always a special affection for me. Everyone tried to protect me from anything happening to me and when this happened there was no person who did not care. Whenever I was hospitalized, there were always many visits from neighbors to teachers. I can say that I was and I am a very dear person.

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