Oskar, left, Lucy and Ava Szajnuk play with their pet Walker at house in Salt Lake Metropolis on Wednesday, Feb. 16, 2022. After years of docs visits and ongoing signs, they're all nonetheless making an attempt to determine precisely what their uncommon illness diagnoses are. Kristin Murphy, Deseret Information
Gina Szajnuk (Zanik) makes dinner at house in Salt Lake Metropolis on Wednesday, Feb. 16, 2022. After years of docs visits and ongoing signs, she and her three youngsters are nonetheless making an attempt to get a prognosis for his or her uncommon illness. Kristin Murphy, Deseret Information
Gina Szajnuk (Zanik), left, Lucy Szajnuk, Oskar Szajnuk and Ava Szajnuk pose for a photograph at house in Salt Lake Metropolis on Wednesday, Feb. 16, 2022. After years of docs visits and ongoing signs, they're nonetheless making an attempt to determine precisely what their uncommon illness diagnoses are. Kristin Murphy, Deseret Information
Ava Szajnuk, middle, and her mom Gina Szajnuk (Zanik) watch as their canine Walker performs on a mattress at their house in Salt Lake Metropolis on Wednesday, Feb. 16, 2022. After years of docs visits and ongoing signs, and 4 mind surgical procedures for Ava, they're each nonetheless making an attempt to determine precisely what their uncommon illness diagnoses are. Kristin Murphy, Deseret Information
Two hours earlier than she went to the hospital to offer start for the primary time, Gina Szajnuk determined to document a video message to her unborn daughter.
“I had a sense — a sort of premonition — that compelled me to do it,” she remembers.
Trying instantly into the digicam, she stated, “You’re going to be my greatest pal, my little sidekick and I’m going to do no matter I can to guard you.”
Little did she know all that promise would entail.
The signs began for Gina proper after Ava was born. She couldn’t regulate her physique temperature. She felt like she was on hearth. She stored her bed room so chilly her husband obtained sick. In a method or one other, her mysterious maladies that started with childbirth have continued ever since.
However they had been nothing in comparison with what her daughter started experiencing after she turned 3. To that time, Ava had been a wholesome child. Now the ER visits got here quick and livid. Cysts, complications, temperature intolerance, fatigue, neuropathy, rashes, infections, sickness after sickness. Then the siblings that adopted her, Oskar and Lucy, began experiencing related afflictions.
Worse than that, method worse, was nobody knew why any of them had been sick. Medical science was stumped. They may deal with the signs however not the supply. Gina and the children had entered the wilderness of the undiagnosed.
It’s troublesome if not downright not possible to adequately describe the whiplash that remodeled Gina’s life virtually in a single day.
One minute she was dreaming of a white picket fence and a household with excellent youngsters. The subsequent she was launched to a world the place mystified docs shook their heads and caregiving nurses appeared away.
“You by no means wish to be attention-grabbing to docs,” a clinician instructed her. “And also you guys are fascinating.”
Gina Szajnuk (Zanik) makes dinner at house in Salt Lake Metropolis on Wednesday, Feb. 16, 2022. After years of docs visits and ongoing signs, she and her three youngsters are nonetheless making an attempt to get a prognosis for his or her uncommon illness.
Kristin Murphy, Deseret Information
Nothing in her expertise to that time advised such a flip. Her childhood rising up the second of 4 youngsters within the Monona Lake suburb of Madison, Wisconsin, was Midwestern idyllic. Her father, Gene, was a doctor, her mom, Barbara, was president of the College of Wisconsin nationwide alumni affiliation.
Gina’s girlhood was stuffed with operating and swimming and enjoying outside, taking something the Wisconsin local weather may throw at her. At Monona Grove Excessive College she was senior class president.
She had massive goals and wasn’t afraid to comply with them. Taking a break between her junior and senior yr on the College of Wisconsin she made her option to Hollywood, the place she labored with the director Wes Craven and thought she may turn out to be a producer. After she graduated she returned to California, was promoted shortly and moved to New York, then Chicago, the place she shifted gears and went to work as director of shopper providers for celebrated sports activities agent Mark Bartelstein’s Precedence Sports activities & Leisure.
On her third day on the job, a younger aspiring agent from Kansas Metropolis, Justin Szajnuk, joined the agency and took the cubicle subsequent to hers.
That they had what Gina laughingly calls “our Jerry Maguire second” and started relationship virtually instantly. A little bit over a yr later they had been married.
“We had a lot enjoyable collectively,” Gina displays on their first years of marriage. They plotted out their future. Gina would work a couple of extra years so they'd be financially capable of begin a household that she may keep house and lift.
4 years later, in 2007, Ava was born, adopted in brief succession by Oskar in 2009 and Lucy in 2011.
They’d all the time deliberate on having a fourth, however the extra the hospital visits mounted the extra the docs advised it is likely to be sensible to cease for now provided that the three they already had, to not point out Gina herself, had been regularly battling afflictions that left them fully baffled.
Gina Szajnuk (Zanik), left, Lucy Szajnuk, Oskar Szajnuk and Ava Szajnuk pose for a photograph at house in Salt Lake Metropolis on Wednesday, Feb. 16, 2022. After years of docs visits and ongoing signs, they're nonetheless making an attempt to determine precisely what their uncommon illness diagnoses are.
Kristin Murphy, Deseret Information
The Szajnuks moved to Utah in 2013 when the Utah Jazz employed Justin (who makes use of the shortened surname of Zanik in his skilled dealings) as assistant normal supervisor. The transfer was delayed as a result of 6-year-old Ava was coping with life-threatening medical challenges on the Mayo Clinic in Minnesota.
As soon as right here, Gina didn’t miss a beat. Her drive to search out the foundation explanation for what ailed them, and to hook up with others in a rare-and-undiagnosed group that may appear so sheltered and lonely, solely picked up steam. Gina embraced the Utah medical group and the Utah medical group embraced proper again. Pediatricians, geneticists, neurologists, immunologists, virologists, internists — all of them went on her pace dial.
Dr. John Carey, of the College of Utah Medical College, has been the household’s geneticist since their arrival. “Unbounding,” he says in describing Gina. “That may be the phrase I'd use. Her vitality is unbounding.
“Gina has the character, the management and the charisma to simply get issues completed. She spurs you on to wish to do as a lot as you presumably can.”
Here's a only a partial spotlight reel of what Gina has been instrumental in serving to “get completed” since 2013:
2014 — Co-founded, with Dr. Reid Robison, of Tute Genomics, RUN, the Uncommon and Undiagnosed Community (rareundiagnosed.org) that has since gone nationwide and worldwide.
2015 — Inaugurated, with the Utah Jazz’s help, RUN’s NBA Initiative, a program that brings youngsters with uncommon and undiagnosed sicknesses onto the courtroom earlier than a Jazz recreation to be honored and lift consciousness. (Seven NBA groups have since adopted swimsuit).
2016 — Led the best way in getting the state to designate April 29 as Undiagnosed Day in Utah (Gov. Gary Herbert signed the proclamation on the Capitol).
2017 — After the Milwaukee Bucks entrance workplace lured Justin away from the Jazz for the season, Gina returned to her native state and launched the advocacy web site wisconsinrare.org.
2018-19 — Upon Justin’s return to the Jazz (en path to being named normal supervisor), Gina organized for Ava to seem on the ground of the Utah Home with now-former Rep. Lee Perry to help laws that efficiently established the Uncommon Illness Advisory Council inside the Utah Division of Well being.
In 2020 COVID-19, after all, slowed issues down.
Ava Szajnuk, middle, and her mom Gina Szajnuk (Zanik) watch as their canine Walker performs on a mattress at their house in Salt Lake Metropolis on Wednesday, Feb. 16, 2022. After years of docs visits and ongoing signs, and 4 mind surgical procedures for Ava, they're each nonetheless making an attempt to determine precisely what their uncommon illness diagnoses are.
Kristin Murphy, Deseret Information
When the novel coronavirus hit — a illness nobody knew something about and had no concept the best way to deal with — the world obtained a style of what the Szajnuks have been going by means of for years.
Gina and Justin watched society’s all-out assault on COVID-19 with envy, imagining what that sort of urgency and dedication would do for the uncommon and undiagnosed.
In the meantime, the battle continues. The children have stayed largely quarantined for the previous two years of their house overlooking the Salt Lake Valley, venturing out for physician and hospital visits however little else. At night time they welcome the Jazz GM again house for dinner. Uncommon and undiagnosed can tear households aside or, as with the Szajnuks, convey them nearer collectively.
The function that mother has carved out as chief defender has not been misplaced on anybody.
“She has all the time been my largest advocate,” Ava says, remembering all of the occasions “she refused to go away the hospital” throughout Ava’s interminable stays. “She is the kindest particular person. She's going to do something for me. My mother could be very uncommon, very uncommon.”
“When my mother made RUN it confirmed us that we’re not completely different, that there’s a complete group of individuals on the market which are the identical as you,” says Lucy.
“Her dedication, her relentless pursuit of look after our kids, isn't ending,” says Justin. “She is an excellent spouse and mom. We've three stunning youngsters which are sensible and care about one another and care about their world. Gina has made positive they've completely happy lives.”
And she or he’s completed it whereas coping with undiagnosed problems with her personal.
“If I had half the stuff occurring with me that she had. I don’t know if I may go even half as exhausting,” Justin says.
Because the Szajnuks proceed to wish, plot and hope for breakthroughs, yearly on Ava’s birthday they've a household custom. They pull out that videotape Gina made in 2007 two hours earlier than Ava was born.
“I’m going to do every little thing I can to guard you,” Gina says, in a voice that has transcended the years.
(To be taught extra about undiagnosed and uncommon illnesses and the best way to help the trigger, go to rareundiagnosed.org.)