Welcome to Ava's Blog.

Ava was born with a rare genetic disorder, Xeroderma pigmentosum (XP).

A condition that prevents her skin healing from sun damage. 

In this blog I share my stories of my daughter and I, and what

it's like living with XP

 

 

                                                                       

 

Unlike most children, Ava can't spend time in the sun, while she has her days outside, it is still very limited, even with sunscreen. She mainly goes out when going to hospital or when we can afford it, she goes to a shopping mall or indoor kids area where she can interact with other children.  Xeroderma pigmentosum (XP) is a very rare genetic disorder and there is currently no cure, she also has microcephaly (small head size) she has dwarfism and a learning disability. Every day life can be challenging, but we stay motivated and find ways to progress. I just want to share our life stories, so more people are made aware of rare genetic skin disorders and to let you know your not alone.

 

 Ava can't be defined by her skin or mental disorder, her personality and heart is more special than words can describe, making her 1 in a million... And i wouldn't want to change her in any way.  Ava even tho she has mental delays and is non-verbal, Ava is very smart, when around other children she always tries to act like the parent.

 

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Hospital Visits

 

After just celebrating that Ava can now walk, just a few weeks later she had to be admitted to the hospital for some reasons, She was in the hospital for about a month. After that, she was discharged and went home. But then we had another problem: Ava has sensitive skin, especially if she's been in the sun. We didn't pay too much attention because we thought it was something minor, seeing as most people in their lifetime do get sunburned.

 

 

But with Ava, it was different. She started getting black dots (freckles) all over her face and neck. Weeks went by, and finally, the doctors told us the name of the skin condition she has: Xeroderma pigmentosum. It is a genetic disorder in which there is a decreased ability to repair DNA damage such as that caused by ultraviolet (UV) light. Symptoms may include a severe sunburn after only a few minutes in the sun, freckling in sun-exposed areas, dry skin, and changes in skin pigmentation.

Here I discuss how it is to parent a child with a genetic disorder and learning disability, and just every day life topics.
I also hope to try spread awareness of children born with genetic and mental disorders.

 

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