Evanna's Story

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Evanna was born with hydrocephalus and spina bifida. Her family lovingly captures Evanna’s journey on her Facebook Community Group at  fb.com/EvannasJoy .

Read a detailed Q+A from the family below:

Can you describe what Evanna's diagnosis journey looked like?
Our diagnosis and timeline were a little different than many others. At the 20-week ultrasound, issues were noted, but spina bifida wasn't the initial diagnosis.

 For eight very long weeks, we were prepared to either lose her during the pregnancy or deliver into hospice. At 28 weeks, after an MRI, we surprised the doctor by cheering when told she had spina bifida, because for us, SB was a known thing, with known treatments.


What have been some of the biggest surprises (positive or challenging) about navigating life with spina bifida, hydrocephalus, and Chiari?
One of the biggest challenges has been the sheer amount of advocating we have to do for her care and safety. I think there was an unspoken expectation that it wouldn't be nearly as much as it has been with doctors, hospitals, and insurance. The flip side of that same coin is a funny story: in 2021 we moved from western Washington, with a very dense medical care network, to North Idaho, with a much lower population and considerably fewer options for medical care...and she has received FAR better care here, and has absolutely blossomed in terms of development.


How has your support system, whether family, friends or the medical community, played a role in your journey?
There have been some twists... but from before her birth, through COVID, and then the move here to North Idaho, there have been people and organizations that unexpectedly and, in some sense, came out of the woodwork to come alongside us and support us.

And so much of that has been absolute divine direction. Case in point: for the first 2+ years after we moved to North Idaho, we were in a 2d story apartment. Was doable, but as she grew, it started getting more difficult carrying her up and down, and didn't allow her to work much on mobility, because that would require carrying her wheelchair or stander or walker up and down those stairs. But in the fall of 2023, there was a couple in our church that had bought a house as an investment, but were having difficulty renting it (which in the market here because of the influx of people, was odd). We were off and on looking, and someone referred the owners to us.
Here's the thing: the house is single-story, has ADA handles throughout the entire house, and a walk-in tub in the master bathroom. It has been ideal for us, and Evanna's development has been massively impacted-she wheels into the house, can turn lights on and off, and can wheel throughout the house. [One of the pics I included was from when we first moved in and she discovered that she could reach the lights from her wheelchair.]


What are some things you wish more people understood about Evanna's experience or about your family's journey?
Have there been difficulties? Absolutely there have been. But this girl is such a joy. Take a moment (or longer!) and see past her wheelchair, or your own preconceived notions about what her life might be like, and see HER.


What are some of Evanna's favorite activities or moments that bring her the most happiness?
She loves animals. Always has. We sometimes go to a local dog park or walk downtown Coeur d'Alene, just to watch dogs. 

She loves Silverwood, our regional theme park that happens to be local to us. There's equal parts love for rides, for the people she meets (cast members and others that work there), and for food (mostly soft-serve ice cream).

She loves reading. We can (literally) check out 3 or 4 dozen books from the library, and she'll go through them in a couple of days.


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Take a moment (or longer!) and see past her wheelchair, or your own preconceived notions about what her life might be like, and see HER.

Visit:  fb.com/EvannasJoy  to support her page.