Rare Disease Day 2021


At what age were you diagnosed with XLH?

Valeria was diagnosed at two years of age.

I was diagnosed at two years old, no one believed I had XLH, because despite my physical features, a good friend of my mom just said that it seemed obvious to me since I am her daughter. Nothing was altered in me, phosphorus, calcium and alkaline phosphatases. But when I was 2 years old, everything began to change. Today I accompany my mom in this challenge that life gave us. She doesn't limits me, I play with my friends. I enjoy doing homework. I am a lover of painting. And I wish I could swim soon. I already did it once and loved it. I am a very smart girl. I learn fast. And I am very loved by my parents.


What do you enjoy most in life?

She enjoys singing, swimming, painting, running, and doing her homework.

Who or what makes you laugh?

She laughs with everything.

Who is your role model?

Valeria’s role model is her mother, although I think her father is her great love.

What do you do to relax?

To relax, Valeria like to sleep, sleep, and sleep.

Are you receiving professional, medical treatment?

She receives professional medical treatment with phosphates, calcitriol and vitamin D.

Are you particularly afraid of something?

Valeria fears nothing. She is a warrior.

What do you do when you feel sad?

When Valeria feels bad she cries for I to hug her and rub her arm or her leg or whatever hurts.

Have you had any operations because of your XLH and if so, how many?

She has not had any surgeries so far.

What has living with XLH taught you?

She learns like any child. To the rhythm of her.

What advice would you give to others in your life?

Enjoy it. There are no physical limitations. But mental.

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