A Better Life for Eve; A Mabry's Journey

Mabry's touches every aspect of her young life. Her journey has been a testament to the extraordinary strength of the human spirit and the power of love, resilience, and community.

Eve's smile could light up the darkest of days, but her condition brought forth a series of challenges that we never anticipated. Mabry's syndrome took a toll on her ability to walk, her muscle tone, cognitive development, and even her vision. But amidst these challenges, Eve has outgrown our expectations time after time.

In the first year of her life our ongoing theory as to why she was having so many health issues were the complications during labor and her Cortical Visual Impairment. Eve had a breathing tube pushed into her throat as soon as she was born and while that procedure could explain some symptoms like feeding aversion, it didn't explain why her body was significantly low in muscle tone.

We have been seeing a laundry list of doctors/specialists since she was born and it took until her third birthday that we finally had our final diagnosis of Mabry's Syndrome.

{oxygen support & intubation}

Mabry syndrome is a RARE autosomal recessive condition caused by an impairment of glycosylphosphatidylinositol biosynthesis resulting in high ALP levels. It is characterized by elevated serum alkaline phosphatase, severe psychomotor developmental delay, and seizures. Fractures, camptodactyly, truncal obesity, and hyperpigmented macules have been described. There are only 30 reported cases in medical literature within the United States and there is not much known about this disease (Eve specifically has the PGAP3 gene variation).

The children's hospital is like a second home to us now and in the three years of Eve's life so far I am still not used to, nor will I ever get used to taking her in to be poked and prodded at for testing.

(9/8/2020)

{EEG testing for seizures, will update soon!}

Our fundraiser has two goals.

Firstly, we aim to provide Eve with the adaptive shelter, therapeutic equipment, and educational materials that she needs to thrive and overcome the hurdles that Mabry's syndrome has placed in her path.

We don't see the diagnosis, we see Eve and she has an incredible light about her. It is a blessing that we have been able to hear her babble and speak words when all we read in the beginning about this disease, was that she may never talk.

She is cognitively progressing but our issue is that it is incredibly hard to get therapeutic equipment, adaptive furniture and educational products because it is either too expensive or repeatedly rejected by insurance. It is a pivotal time to be accommodating to her childhood development as it is the best and only option we have to nurture that light.

Our second goal,

Any funds that are no longer needed for Eve's journey will be pledged to an incredible organization known as "Moon Shots For Unicorns." This organization is at the forefront of critical research into Mabry's syndrome, striving to turn groundbreaking discoveries into clinical trials. Your generosity won't just transform Eve's life; it will also contribute to a brighter future for all those affected by this rare condition.

One of the biggest issues in finding a treatment or cure is the funding it takes to go through out clinical trials. On average these clinical trials and tests can costs anywhere from 2 to 20 mil.

You can help by donating or learning more about Geri Landman, her daughter Lucy and their journey through this link here: Moon Shots For Unicorns

Update: We would love to make you art to say thank you! Please comment your name below so we can add and tag you on facebook!

{9/10/2023}

Thank you for taking the time in getting to know Eve and her story. We are incredibly grateful for any support in either raising awareness or funding. This page will be actively posting updates on Eve's journey, progress and details on how your fundings contributed to her life.

{9/13/2023}

Thank you to an old and good friend of mine Tatyana. She has the biggest heart and is an amazing mother. Most of all, thank you to Eve's Nana, Teresa Anastopoulos or how she likes it to be called "Glamma". Apart from your donation I can't thank Eve's Nana enough for being there for both Eve and I. From accompanying us to our never ending medical appointments or listening to me stress cry, she has been there to make sure our boat never sank. Love you Glamma

{9/14/2023}

Wow, what a huge whirlwind of emotions in the past couple of days.

I can't quite articulate the type of love and support that we felt except to say thank you!

We immediately wanted to try hand print art as a sentiment of our gratitude today.

I would love to make more art with Eve to thank our donors as we go, please comment your name so we can add and tag you on facebook. Today's art is thanking Tatyana and Richard Rost!

{9/22/2023}

We now have a TikTok page up for Eve. We don't plan on putting her in a lot of the videos since we don't feel comfortable exploiting her the privacy/agency, but we are hoping to spread awareness on that platform! If you want to follow along you can click here: TikTok abetterlifer8

{12/11/2023}

There is some huge momentum in the clinical research study on PGAP3, thanks to moonshootsforunicrons.org !

That means Eve and 50 other children have a chance for getting a first time treatment for this disease. I am hoping, from the bottom of my heart we can help every child, parent and family. Please keep us in your prayers. (We need the extra energy lol) We are also hoping to post more photos and updates soon!