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Help us on our mission of finding a cure for INAD/PLAN. Alice’s family is fundraising to help us bring our gene therapy program to a clinical trial:

Alice M.

4 Years Old | Carmo do Rio Claro, Brazil

About This Superstar

Age of Diagnosis
2 years and 10 months

How INAD had Impacted Their Life
INAD impacted my daughter Alice’s life very quickly!

Alice had her normal development until she was 18 months old. Alice sat up alone, crawling and walking 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 Alice didn’t want to crawl and walk because she was no getting to do this.

Favorite Activities
Currently, Alice likes to walk in the park.

Favorite Foods
Alice likes to eat rice, beans, chicken and boiled pumpkin.

Favorite Television/Movie Character
Canine Patrol and Luna Show

Favorite Books
Alice likes me to read her the Little Red Riding Hood story

Parent’s Favorite Motto or Expression
My expression lately after we get the diagnosis is always to say to Alice “hold on until our cure comes” and “keep being strong and brave”

What They Would Like the World to Know About Their Experience Living with INAD
I hope that INAD will become a disease known around the world, that there will be more studies and that research will always advance!

I hope that all doctors in the world are aware that INAD exists and that we families affected by INAD no longer need to hear that phrase “I have never heard anything about this disease”.

I hope that INAD will leave at once and take all the suffering, anguish and despair that this disease has brought to our families!

Let the world know that we parents of children with INAD feel the greatest love in the world and the worst pain in the world walking side by side.

Special Fun Facts
My daughter Alice is very lucky to have her cousin Valentina by her side, who is like her sister!

The love they feel for each other is like love of sisters! She’s understand each other perfectly through the look and the smile.

They love being together! Valentina has a very protective instinct with Alice and takes great care of her.

May the cure for INAD be found, so that we can live in peace and remember these moments of anguish that we are going through just as a bad phase that we are living!

I really want to see Alice and her cousin Valentina live moments that I always dreamed of, like walking in the park holding hands, going to school together and running around playing together.

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