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This week’s blog is written by Isabela Ribeiro, mother to three-year-old Alice who was diagnosed with Infantile Neuroaxonal Dystrophy (INAD). Isabela became a volunteer at the INADcure foundation after her daughter was diagnosed with the ultra-rare disease INAD. She has been raising awareness of this unknown rare condition ever since in Brazil and beyond. This is Isabela and Alice’s story!

My name is Isabela and I am Alice’s mother, who is three years old. We are from Brazil!

I always dreamed of being a mother. When I found out that I was pregnant with Alice, it was a dream come true! I had a smooth pregnancy and everything went well. I prepared everything with a lot of love and affection for the arrival of my sweet Alice. When I first saw Alice, our date was a meeting of souls. A love too strong to explain!

Alice had her normal development until she was 18 months old. Alice sat alone, crawled and walked with support. After 18 months, we noticed a regression in her development. Gradually, she lost her acquired skills! It was nerve-racking when I realized that Alice didn’t want to crawl and walk because she was no longer able to do so.

After many tests and medical consultations, we found out through a genetic test that Alice has an ultra-rare neurodegenerative disease called Infantile Neuroaxonal Dystrophy (INAD); A disease which affects the central nervous system. A mutation in the PLA2G6 gene!

Unfortunately, this devastating disease has no cure or treatment! There are researchers searching for a cure for Infant Neuroaxonal Dystrophy (INAD), but because it is an ultra-rare disease, there is little funding to help with the research. The INADcure Foundation  is the only non-profit foundation that raises funds to support this research together with families! We need to make INAD a better known disease, so there are more studies and advances in research to save the lives of children affected by this cruel disease.

For more information about Infantile Neuroaxonal Dystrophy (INAD), please visit the INADcure foundation website.

I also created an instagram account (@inadcure_teambrazil) to raise awareness about INAD and share Alice’s story with this diagnosis to make INAD a known disease!

Isabela & Alice: Raising awareness of Infantile Neuroaxonal Dystrophy

by Guest Contributer time to read: 3 min