This site is dedicated to providing links to products for sensitive skin and children with special needs, living with a genetic disorder or even having a child with special needs can be stressful at times, especially when trying to find the right product for our childrens skin. Here i give my recommended products i have personaly tested and products that have had great reviews.

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Uniquely Human  

Sunscreen for sensitive skin

Fun time activies for special needs children

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. Even tho Ava has mental delays and is non-verbal Ava is very smart, when she is around other children she always tries to act like a parent and sometimes even shows children how to do things in a safer way.

 

It's also so hard finding the right moisturizing lotions and sunscreens for childrens delicate skins, even the right hair products can be a daunting task to find, especially for curly hair, so many expensive products i have tried but just never seem to work. I will also share any recommendations for what I or others have found useful that actually work. 

 

Ava is non-verbal and communicates through gestures, body language, and hand movements. She works hard to form an understanding of words and to express herself in her own special way. There are moments when I find it challenging to understand her, and that can be frustrating for her—she wants to tell me what she needs, but sometimes I struggle to interpret her signals. To bridge that gap, I often point to objects around the house or ask her dad for help. 

Despite these communication challenges, we refuse to overlook her cues just because they’re not immediately clear. As parents, it’s our responsibility to learn her unique language and to support her in every way possible. Every day, Ava makes progress, and I believe that with patience and perseverance, we’ll continue to grow together. I am proud of her resilience and the small victories she achieves each day.

 

 

I also want to share a thought about societal perceptions. During a recent visit to Ava’s regular hospital appointment, a lady sitting next to me asked if my daughter could talk. When I explained that she is non-verbal, she looked at me with sympathy. While I understand her kindness, I want to emphasize that Ava’s inability to speak does not define her worth or potential. She is a vibrant, capable individual—just as deserving of respect and recognition as anyone else. 

Her journey is unique, and it’s a reminder to us all to look beyond labels and see the person within. Every child has their own path, and it’s our role to support, understand, and celebrate that journey.

 

 

 

 

Thank you for taking the time to read about Ava’s journey. Your support and understanding mean the world to us as we continue to navigate this path. Let’s remember to celebrate every child’s unique voice and potential—because everyone deserves to be seen, heard, and valued.

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