06 Sep César’s Superhero Story
César is a SLC13A5 Superhero. Here are a few fun facts César’s family shared with us!
- Name: César
- Age: 1
- Home country: Spain
- César is a child who is always laughing out loud!
- He loves toys with music and lights.
- Lamps and contrasting paintings are his passion.
- His favorite toy is cheerleading pom poms!
- César loves to bathe in the pool, he looks like a little fish. We love to see how he moves his legs and arms in the water!
- He is very ticklish.
- He really likes strong sensory activities.
- He loves to imitate the sounds his mom makes about him.
- César loves to play and pull his dog Nala’s hair.
- He really likes to be told stories.
- We are fans of carnival and costumes.
A Love Letter from César’s Family
César’s Medical Journey
César is a wonderful boy. He was born on August 22, 2022. It was a complicated delivery because César had tachycardia (a high heart rate) and I had to have an emergency C-section. Complications from the C-section continued in the recovery room. I couldn’t hug César for more than 10 minutes. When he was finally stable, they put him in my arms and we went up to our room. That’s when he started convulsing. He was immediately admitted to the NICU and left under hypothermia for two days to prevent further brain damage. It was very hard to see my baby completely frozen and with his eyes closed. The doctors told us that César was seriously ill. They were very hard days. Separating from your baby as soon as they are born and not knowing if you are going to see them again is the worst experience a mother can have.
Fortunately, the doctors found the diagnosis when César was only 21 days old. The diagnosis paralyzed our world but at the same time it helped César a lot, since they quickly found the drugs that stopped the seizures. From September to March, César did not have any seizures. In March, when his medication was very low, he had 3 small seizures, but they were immediately controlled.
Currently, César has axial hypotonia (low muscle tone) and we observe delays at the motor level. It is a hard road but his smile is our engine. Since he was in the NICU he nursed skillfully and he is very demanding of breast milk. Now they have put glasses on him because he has far-sightedness and astigmatism. Now César sees better and moves better. He is a very good boy and the days with him are wonderful.
Since his horoscope sign is Leo and his strength is infinite, we always say that César is a lion. We have a house full of lion stuffed animals, lion paintings, and lion toys. The lion has become a symbol for our family. In fact, we have an instagram account where we talk about the day-to-day life of this little lion and give visibility to atypical motherhood.
Since he was 21 days old, he has had the help of an occupational therapist, a speech therapist, and a physiotherapist. They are a wonderful team and help César a lot.
I am an Early Childhood Education teacher and educational psychologist and I have set up my own space at home to work with César and help him evolve.
