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Dear community,

Updates (52)

September 18, 2020

Thank you to The UPS Store., located at 2601 South Minnesota Avenue, suite 105, in Sioux Falls, South Dakota; for generously printing several campaign flyers and raffle tickets for us to use in our fundraising endeavors, as well as waving the fee for them.

September 15, 2020

Hello everyone,

I just thought that I should take a few moments to update you in regards to Dezzirae’s latest medical goings on

With that said…

I can honestly tell you that the last two days have been extremely busy due to her having several doctors appointments at our local Children’s Specialty Clinic/Hospital.

In fact…

Yesterday, we met two new members of Dezzirae’s care team that we are beyond thrilled to know have her best interest at heart and are planing to join together with all of the other specialists she sees since they too, would like to help better her quality of life.

In case you are wondering…

One of them was a nephrologist who would like to run extensive tests in order to determine the cause of Dezzirae‘s edema (water retention) and rapid weight gain so that kidney failure, a thyroid disorder, and blood clots can hopefully be ruled out.


The other was an incredibly compassionate geneticist who was able to eliminate most of our fears about the unknown while explaining Giant Axonal Neuropathy (GAN) in a way that no one else has ever been able to.

Not only that…

But he also pointed out a rarity in both Dezzirae’s and her Mom’s genetic make up that tends to cause pregnancies to end in miscarriage and how it is that she is even more of a miracle than what our family already knows she is.
(The same can be said for her siblings)

Aide from that…

This morning, we visited with her pulmonologist who gave us the wonderful news that her lung function seems to be somewhat improved now that she has a Trilogy machine (ventilator).


We also got a good report from a member of the surgical team when she told us that her incision looks incredible and there is no irritation or granulation tissue as she was changing out her Antegrade Continence Enema (ACE).


All in all, the past two days have been pretty good, and we could not be any happier than what we are right now.

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July 28, 2020

What a beautiful girl you are Dezzirae! What an amazing journey you traveled through so far, and you keep making it; God inside and all around you carrying you through. Many prayers for your beautiful spirit, and your loving family's as well. Heart hugs!

Amy Harless