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June 27, 2024

Rays of Hope: Aubree, Ryan, & Jackson, Part 1

Though he’s not so little anymore, eight-year-old Jackson Midgett has been battling illness since birth. His parents, Aubree and Ryan, vividly remember those challenging early days, citing his airway defects, gastrointestinal issues, trouble swallowing, and ultimately, the need for surgical intervention. However, this was only the beginning of Jackson’s journey. 

Jackson’s condition remained technically undiagnosed due to its rarity, but he is being studied and treated for macrophage activation syndrome or hemophagocytic lymphohistiocytosis (HLH). Currently in palliative care, Jackson is relatively stable with the help of immunosuppressants and total parenteral nutrition (TPN), according to Aubree.

Continuing Gus Gear’s Rays of Hope series, Aubree and Ryan share their experiences with Amy Braglia-Tarpey, our Director of National Clinical Growth. They discuss Jackson’s condition and his love for simply being a kid whenever he can.

Q&A With Aubree and Ryan

The Beginning of a Journey with HLH

Amy Braglia-Tarpey: Where do you call home?

Aubree Midgett: We’ve called home Virginia Beach, VA for quite a long time. I originally was in San Diego, CA; but we were military and uprooted here. So, [Ryan] and I met here and have been here… What is it, thirteen…?

Ryan Midgett: Fourteen.

AM: Fourteen years we’ve been together now.

ABT: Would you introduce us to Jackson and whatever you’re comfortable sharing about their medical journey?

AM: Jackson is our eight-year-old little boy. He’s not so little anymore. He presented ill from birth. He started with airway defects. He would turn blue; we would have issues with stridor and different things, so we had surgical intervention. After that we started to have some GI issues and issues with swallowing. It led from a G-tube, to a GJ-tube, to TPN dependence because of intestinal failure.

As our journey went on, we had been to a few different places because there was a concern for mitochondrial disease, and then he was diagnosed with eosinophilic esophagitis, so we headed up to Cincinnati Children’s to see a facility up there. As it has progressed, he is now in a cohort of kids that is being studied at Cincinnati Children’s. The closest thing you can label him is macrophage activation syndrome or hemophagocytic lymphohistiocytosis (HLH), basically the macrophage withdrew all the good blood cells and, in his case, decided to attack everything. As our journey progressed, he had intestinal failure. He has an ostomy now; he lost his colon because of the disease. So, as it is right now, we’ve moved him to palliative care. He’s sitting in a kind of stable spot with immunosuppressants and TPN — and he’s 100% IV. 

RM: That’s a pretty good overview of it.

AM: He is technically undiagnosed because we are so rare. But we’ve kind of gone through the journey and settled where we just want quality of life.

Before and After Gus Gear

ABT: Can you tell me about what life was like before and after Gus Gear?

AM: Do you want to tell them the story?

RM: I’ll let you tell it, but he’s a typical boy that wants to…

AM: …climb and move. We first got our line around 18 months old and I don’t even remember what he was doing but he broke it; he cracked the line. I mean, we had it taped up as much as we could. We turned around and TPN was all over the floor and we ended up at the hospital getting a line repair. We were new parents too. We had dealt with a picc line and now we had the Hickman. We were new to dealing with this. 

That’s when I spoke with a friend who had had lines and stuff and she was like, “I’m buying you a Gus Gear.” And I was like, “What is this? What is a Gus Gear?” Sure enough, a few days later, it showed up at my door — she had asked me for measurements and all that kind of stuff. That’s when I actually started using Gus Gear. I have a picture of him when he was really little running; he’s halfway across my living room and you can see the curly tubing stretching. But you see him in his little Gus Gear.

I’ve connected with Sarah and we’ve talked a lot over the years about Gus Gear. When she shifted to a new model we were able to work with that and use that. It’s been 7 years now that we’ve had it and it’s just like any other piece of clothing for him; but it’s so much more. That’s kind of our entry into Gus Gear and we’ve had them ever since. He’s 24 hours connected to his lines, so he does not go a single hour or day without Gus Gear unless he’s bathing. 

He still likes to scare us with potential line breaks, but since we started Gus Gear, we have not had a single line break. In seven years — knock on wood. 

ABT: For those of you who aren't familiar with the realm of home parenteral nutrition, line infections and line breaks are very common occurrences and also very dangerous, so it’s great to hear you’ve been able to use Gus Gear to help prevent those problems and keep your child at home. That’s wonderful; thanks for using us over all these years. 

So, what does Jackson like to do for fun these days?

RM: He’s an interesting kid. I mean he just got into playing some video games. He’s always done Lego.

AM: He’s convinced you to build a 10,000 piece Titanic set that they’re working on right now. Leggos all the way. And he loves to just explore things so he’ll see something on a Youtube video and then just explore.

RM: Just random topics you would not expect an eight-year-old to have any interest in.

AM: He loves stuffed animals, loves animals. He’s just a builder and a thinker — I would really describe him as that. And he’s a phenomenal kid. He’s in school right now; we’ve finally gotten to the point where he’s able to go to school full time. And he absolutely adores just being a kid. That’s really the goal — normalcy. Even though normalcy cannot be defined in our world. But for him it’s just doing the things that his sisters do (I have twin ten-year-olds as well), and just being himself.

ABT: That’s great. The Legos sound like a lot of fun. And a lot of work. 

RM: And cleanup.

AM: And money.

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