Murilo P.

6 Years Old | Brazil

About This Superstar

Age of Diagnosis
3 days before his 5th birthday

Finding A Diagnosis:
Murilo was doing everything normally when I noticed him walking on tiptoe with an imbalance he was 16 months old, we went to the neurologist where we did 2 genetic tests, but we were not successful, he referred us to a geneticist, who started an investigation that dragged on for years, I went back to the neurologist who asked for a solution, crying when he gave me the request for the “Exome” Genetic mapping giving the result ATYPICAL INAD.

How INAD Has Impacted Their Life
Murilo learned to walk, run, play ball, talk, eat alone, go to school, learned the alphabet, shapes and colors at 2-5 years old. His regression started at 3-4 years old, slowly the atypical INAD started to take away his gains, but even so, he doesn’t lose his joy of living, his smile rarely disappears from his face and always very affectionate.

Favorite Activities
lining up strollers, play on the tablet, swim in the pool, play in the condominium square, watching favorite cartoons on Netflix and going for a ride.

Favorite Foods
savory: lasagna, pizza

sweet: ice cream, chocolate danette

Favorite Television/Movie Character
masha and the bear, peppa pig and spotted chicken

Favorite Books
Murilo was never able to pay attention to readings, but he likes colors, letters and shapes, that’s how he learned them.

Parent’s Favorite Motto or Expression
positivity always, have faith

What They Would Like the World to Know About Their Experience Living with INAD
Murilo is a child with a lot of energy, super positive, happy, his screams overflow his emotions, as his words and skills are being taken away, but he is very persistent, because he is always learning something new, he never gives up. He’s a fighter every day he wins a different battle, it’s admirable because, he doesn’t envy the child who can run, jump, do what he can’t, I see him just admire, applaud and find grace, that’s the purity of a child.

Special Fun Facts
My mother-in-law Damaris has a dominant Machado de Joseph disease, it also doesn’t have a cure yet, it’s scheduled for about 10 years from now. She dreamed of having a granddaughter and I gave her a grandson. She fell in love, you have to see the love that shines in her eyes to see Murilo walking around the house in his wheelchair, talking grandma grandpa. Damaris loves it, is tempted to touch him in the midst of their difficulties, as their disease is already well advanced, a dream is to see the two receiving the cure and having a dignified life and to see Damaris walking hand in hand with her grandchildren Murilo and Antonela.