Julia Maria Barco Figari

Age: 27

A little about me,

Julie is my angel, Julie is my life and my happiness, I thank God every day I live with her.

Julie love puppies and all kind of animals, she loves babies too, she is the most tender girl I know! We have a big family, father, brother, grandparents, cousins and friends she is loved by everyone, she has a very happy life!

Julie has a brother born two years before with no problems.

When she was born she looked like his brother. We didn’t notice she had any problem.

When she was two years old she was diagnose severe deafness, and every year that goes on she has more problems.

At school she can not study as the kids of her age did , we try with one teacher by herself but it didn’t work, she was diagnose then as a border liner girl. Then I saw her hands begin to shake a little, then she couldn’t walk as the other kids, she begin tremblig…also she has a very high sensitiveness to sun, she get scars on her face and body if she was exposed to the sun.

She also used brackets for almost ten years, always when she took her brackets off the teeth move forward again!

We went to National Institute of Health when she was 8 years old, the doctors couldn’t diagnose her with exactitude, they told me she could have XP.

We return to our country, Peru in South America.

Julies shaking was getting worse, she also stopped walking for a year, then after a lot of rehab she began walking again!

Years passed and when she was 17 years old we went again to NIH then she was diagnose as CS. She has a very mild case of CS. That why it was so hard to be diagnose.

Today Julie is 27 years old, her tremor has get worse, she has to hold her face to even to taken a picture, she usually needs help for eating and brushing her teeth, if she do it by herself her gums bleed. Julie needs to be attended by a person every time of the day.

Julie attends a special school where she make crafts , paint she is entertain from 8 in the morning to two in the afternoon.

I wrote a book (in Spanish) it has not been edited of our life together, if someone would like to have it I could send it by email.

Love to our CS family!

Julia Maria Figari.


CS Child CS Child CS Child CS Child

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