top of page
User Name

Amazingly Ava

A Little About Amazingly Ava

Ava is a smiley 2.5-year-old little girl who was born in June 2019. Her father Anthony is a United States Marine Corps veteran, and her mother Lauren is a licensed marriage and family therapist. She was diagnosed with an extremely rare genetic mutation called COL4A1, or Gould Syndrome, which causes strokes in utero– there are fewer than approximately 300-400 known cases worldwide. Ava has also since been diagnosed with Microcephaly, Cerebral Palsy, Focal Epilepsy, Gastroparesis, feeding difficulties, farsightedness and global developmental delays as a result of Gould Syndrome. Gould Syndrome affects the collagen making up various organs in the body, including the brain, blood vessels, eyes, kidney, lungs, heart and liver. Ava has already done so many things we were told she would likely never do! She loves walking, dancing, blankets, the color blue, water in general, being outside, strawberry, chocolate, fruit, spaghetti, man n cheese, trying new foods, babies, ALL people, her furry friends, Care Bears, toy vacuum cleaners, bubbles, communicating by various methods (signing, pointing, laughing, talking) and so much more! We first began our journey when Ava's pediatrician noticed her right pupil was larger than the left, then again when Ava's head wasn't growing at the proper rate and not at all on the charts. Consequently, Ava saw a neurologist, had an MRI and was officially diagnosed with Microcephaly. Since then, in order to be properly diagnosed and cared for she has seen pediatrics, neurology, neurosurgery, infectious diseases, cardiology, nephrology, pulmonology, genetics, developmental medicine, rehab medicine,ophthalmology, audiology, gastroenterology, allergy, nutrition, prosthetics, and more. She currently has weekly physical therapy, occupational therapy, feeding therapy, speech therapy and play therapy (early childhood education). It is our hope that Ava can serve as a pillar of hope, motivation and inspiration for all!

2 views0 comments

Comments


Collapsible text is perfect for longer content like paragraphs and descriptions. It’s a great way to give people more information while keeping your layout clean. Link your text to anything, including an external website or a different page. You can set your text box to expand and collapse when people click, so they can read more or less info.

Country:

Email:

<Email>

Author:

<Athors name>

More stories by this Author

Beneath The Tracksuit

Andreea Lichi

A Mug Designed with Everyone in Mind

Andreea Lichi

You Only Get One Life

Andreea Lichi

Finding Strength

Andreea Lichi

Voiceitt

Andreea Lichi

My story

Andreea Lichi

My HSCT Story for MS

Andreea Lichi

My Wheelchair was stolen by passengers

Andreea Lichi

Champion in My Own Arena

Andreea Lichi

My story

Andreea Lichi

12 hours that changed my life

Andreea Lichi

My Chronic Illness Story

Andreea Lichi

That bunny is just like me!

Andreea Lichi

Finding My Passion

Andreea Lichi

Start walking by mylself

Andreea Lichi

Belinda’s Accomplishments

Andreea Lichi

#StandUpOrDieTrying

Andreea Lichi

MD- My Determination

Andreea Lichi

Motivational

Andreea Lichi

C4 Quad Rolling Through Life

Andreea Lichi

Related Service Provider

I-WHEEL
Apache Adaptive Solutions