International XLH AllianceInternational XLH Alliance

Rare Disease Day 2021

farah

At what age were you diagnosed with XLH?

At five months of life. Her diagnosis was very early, since the disease was inherited from her father.

What do you do when you feel sad?

She can feel bad in two situations: 

When she feels bad about pain, I have to force her to rest. I sleep with her so that she stops moving to calm her down, because she has a lot of energy and sometimes she doesn’t know when to stop. 

When you feel sad, it is usually because you felt limited or something you wanted to do and your body did not allow it. There is nothing that angers her more than that. I hug her and try to explain to her that when you want to achieve something, it is not always achieved the first time, that we must keep trying at our own pace. I show you with facts, that you can always notice small advances, and if when you try again it turned out a little better than before, we should be happy about that.

Meet Violeta and her mother Farah!
This Christmas Violeta asked Santa for a scooter. She remembered it almost every day, so of course Santa knew and came.

The next day she wanted to try it and the first moment she got on I thought (in my mind, I did not say it), she will not be able to learn to use it well because of her bowed legs and she will not be able to support her two feet on the base. It is very narrow. Putting her two feet on the ground is hard for her. Honestly, it was going to be impossible.

I thought, “I have to prepare myself for her to cry, to be sad and to be angry because she is going to see how her brother will be able to do well and she will not. I should convince her to play something else. "

But I didn't say anything and waited.

That day we were out for about an hour. She was able to make the scooter moving, but not much. She did it with difficulty and I kept thinking "She won't be able to support her feet, that's why she won't move forward."

We went out every night to practice and every day it became faster. After a month of riding her scooter I was almost flying (ahahaha) and I realized that the limitation was only in my head, that she did not need to be on the scooter like everyone does. She looked for her way to do and succeeded.

One day I asked her: “have you tried to put both feet on the base” and she said “I can't, but it doesn't matter because I don't need it, look at how fast I am” and she sped off in front of me (hahahaha). How right was my little girl ...

I remember it now and I think that well, I didn't say anything because perhaps my apprehensive comment or denying her the possibility of trying it would have had an impact on her, her confidence and her desire to achieve it.

As a mother, it is normal to be afraid for our children and even more so if you think that doing certain new things can cause them harm, but we must understand that limitations are sometimes put on ourselves and that we would never know if we could do something if we never tried.

Violeta and her mother Farah

What do you enjoy most in life?

Dancing and listen to music. She dances from the moment she gets up until she goes to sleep.

Who or what makes you laugh?

Most. She is a very happy girl and you can see her with a smile on her face always. 

Who is your role model?

I think like all girls, her role model is her mother. For example, she loves to cook with me, dresses the same as me, and help out around the house. She really likes us to be together and she copies almost everything I do. Sometimes a mini mom perishes. 

That is why I feel a great responsibility, I feel that I must be the best example of a person for her.

What do you do to relax?

To help her relax, she takes warm baths every night, and she also likes to be massaged. The movement you do during a normal day sometimes causes a lot of pain in your legs. 

Are you receiving professional, medical treatment?

Yes. She is on the conventional treatment for XLH, Phosphate and Calcitriol, from the age of five months. 

Are you particularly afraid of something?

The truth is that she is a very brave girl. Me, as other, have many more fears than her. For example, when I see her playing in the park, climbing high stairs, or experimenting with her body maneuvers, I am afraid that she will fall and hurt herself. But she is not afraid of anything.

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

No. She doesn’t had any surgery. 

What has living with XLH taught you?

She had to learn that medicines are part of her life and that they are necessary for her to be well.

What advice would you give to others in your life?

May we help our children to be safe, confident, courageous, empowered in their life and their illness. That they know what XLH is and that, if someone asks them and not to hide. That they understand that you are not an inferior person because you have a disability and that having a rare disease is not synonymous with pity. 

It is true that ordinary things become much more difficult for us, but that is what consequently makes a person with XLH even stronger. 

We must understand that we are all different, unique and unmatched. That is exactly what makes us who we are. 

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