Rare Disease Day 2021


At what age were you diagnosed with XLH?

3 and a half years.

Samuel is 8 years old and was diagnosed with XLH when he was 3 years old. Samuel does not like the dark and spiders but enjoys being with his family and friends. He has learned at a young age that everyone is different and to respect and be affectionate to everyone. His role model is his mother, he loves her very much, she is beautiful, kind, caring, special, takes good care of Samuel and the whole family. Samuel enjoys singing, tik tok, playing and travelling and walking together with his family. Samuel says, "Enjoy the good times, joy every day."


What do you enjoy most in life?

Being with my family and friends.

Who or what makes you laugh?

Mami, she is very fun and funny …rsrsrs.

Who is your role model?

My motherShe is beautifulfriendlycaringspecialtakes good care of me and my family and I love her very much.

What do you do to relax?

I sing, dance, do Tik Toksplay, I like to walk and travel with my family.

Are you receiving professional, medical treatment?


Are you particularly afraid of something?

Fear of the spider and being alone in the dark.

What do you do when you feel sad?

get sad and upset

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


What has living with XLH taught you?

That people are different and we have to respect and be affectionate to everyone.

What advice would you give to others in your life?

Enjoy the good times !!! Joy every day !!!!

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