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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