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Kabuki Syndrome: Indiana Wish provided Archer Ruzic with a playground
Archer Ruzic, who has been diagnosed with more than two dozen diseases and conditions, giggles
Sagittarius Ruzic giggles like a baby lamb and barks softly and beautifully as his father dotes on him in the kitchen of the family’s west-side home. Archer is four years old and non-verbal, mostly silent when not crying in pain or, as he does now, giggling softly. This is one of those giggling moments for Jesse and Olivia Ruzic, when everything feels right — the hospital visits and seizures, the heart surgeries, the medications on the counter like they live in Walgreens.
That was another moment when everything felt right: a trip to Walgreens.
This was in Michigan four years ago, after one of Archer’s surgeries, which involved the insertion of a feeding tube into his stomach. Archer was six months old and couldn’t eat by mouth – still can’t, really – and was fed through a nasogastric tube. His waving hands had discovered the nasal tube one day, and “pulling it out became his favorite hobby.”
That’s from Olivia, the kind of delightful things she or Jesse will say about their son, about their situation. Their power is supernatural and comes from their faith. They met in 2012 at a seminar in Chicago, when Olivia stumbled and… well, we’ll tell that story in a moment. By March 2020, they were married and living in Michigan, where Jesse was a pastor and Olivia worked alongside him, when the trip to Walgreens occurred.
Archer was in the hospital after something went wrong following the feeding tube insertion. He had a stroke and the doctors told his parents – well, you can imagine what they told his parents.
“They thought he was going to die,” Olivia says.
Olivia and Jesse prayed, and Olivia posted an update on Facebook asking – pleading – for more prayers.
“People all over the world were praying for him,” she says.
This was a viral social media post that crossed oceans and returned to Michigan to a Walgreens, where Olivia was getting medication for Archer when a woman approached her:
“Are you Archer’s mother?” she asked Olivia. “I pray for him.”
These are the moments that sustain a father and mother when their son, their sweet little Archer, has been diagnosed with so many diseases and conditions – more than twenty, many of them unrelated – that eight of his eleven organ systems have been affected. However, the family needs more moments. That’s why they called Indiana Wish last year. They looked for help. They wanted to hear more of that wonderful giggling.
Olivia Ruzic, 32, tries to explain what it’s like raising a child like Archer. She goes old-fashioned, to the video game Tetris from 1985. Do you remember that one? Are you trying to put the blocks together?
“Parenting in rare diseases feels like a game of Tetris, and it’s impossible to win,” she says. “You’re constantly trying to put blocks together that just fit won’t: How does this drug that helps one organ system affect another organ? Are we so preoccupied with medical issues that we neglect developmental issues? We have two other children – are we neglecting them? You always wonder, ‘Am I doing enough?’
“Working with Indiana Wish was such a wonderful experience. They asked a beautiful question: which wish would bring your child the most joy?
Olivia pauses.
“Indiana Wish lined up the most blocks for him.”
Indiana Wish is available all year round
This is an annual story read, the second part of our Indiana Wish series for the holidays. It started last year with a story about a wish granted in 2019 to Lauren McGlaughlin of Muncie: a family trip to France, her idea, for memories that would support Lauren’s parents and siblings after her eventual death from cancer the following year.
Some wishes are big, like that. Some are smaller. The average cost is $12,000, and Indiana Wish is a nonprofit organization. Every wish is fulfilled with the help of donations from the community.
Why write this story? Why write it every year – and during the holidays, when we would rather laugh than cry?
I can’t tell you exactly. It just feels good. As we come together in December and celebrate whatever we celebrate, let’s love people whose lives are unlike ours — and support groups like Indiana Wish, whose sole purpose is to comfort families enduring their unimaginable struggles.
Pause for a moment. Let’s put ourselves together. You need to find out about Olivia and Jesse, and about Archer and his two brothers. And you have to see the wish they received.
Indiana wish, 2023: Lauren McGlaughlin lives on in the memories of her family, from Muncie to Paris
Fulfilling Archer’s wish
Archer loves the park. Well, he would love the park if it weren’t so overwhelming. He likes the slide. Loves to swing next to his older brother, Jack, 7.
But Parks usually have other children, and the stroke Archer suffered at six months caused a brain bleed in his thalamus region, where sensory processing takes place. He becomes so overwhelmed that he withdraws and lies down on a mat to get away from all the stimuli. His frustration leads to emotional pain, not to mention the increased risk of infection that comes with being around other small children. When Archer gets sick, he has more seizures. The cycle is terrifying and heartbreaking.
Archer loves the park, but the parks don’t love him. That’s why the family wanted a park in their backyard. Nothing big: a swing for Archer, Jack and brother Dash, 8 months old. A small trampoline. Like this.
Indiana Wish built an interactive playhouse with swings, slide and cabin. Archer is there playing with Jack, waving or sliding or just hanging out in the cabin. It’s like their own fortress, just the two of them, after Jesse or Olivia help lift Archer into the cabin. He can walk short distances, but needs help climbing.
Indiana Wish also built a mesh trampoline. Jesse and Archer get on and jump together, literally together: Jesse, 34, puts his arms around his son and they bounce up and down. They are safe, they are together and they listen attentively. Do you hear it?
Archer giggles.
Why Indy? Riley Hospital for Children
She is from Franklin, Indiana. He’s from Washington DC. It was at the Moody Bible Institute in Chicago where Olivia and Jesse “met,” if you can call it that. It looked more like she was walking to class, walking down the stairs and tripping. She didn’t so much land at Jesse’s feet as she did at the feet of the 6-2 on them.
“Sorry,” Olivia said to the tall DC stranger before hurrying away in embarrassment, “I’m just getting used to this walking thing.”
Now Jesse shouts after her to slow down and come back:
“I’m falling for you!” he shouted.
Great line, you have to admit.
They married and soon had Jack. Then Archer came along, and right away – when he wouldn’t cry after giving birth, for example – the doctors knew something was wrong. Three open heart surgeries in six months. A diagnosis of Kabuki syndrome, a punishing genetic condition that affects the body and brain. More diagnoses: Kidney damage. Brain damage. Diaphragm in the wrong place. A muscle mutation. Epilepsy. Autism. More.
“I don’t want to go into the whole list,” says Olivia, whose family moved to Indianapolis last year to be closer to Riley Hospital for Children, “but he’s not the most acute. I know someone who puts his son in it hospice now. You would be shocked by the intense level of suffering – but also by the intense level of joy that these children have, including my son.”
Archer likes eggs and sausage. He reads electronic books, and damn if the kid doesn’t prefer to listen in Spanish. His parents used the controls when he was sleeping and switched it back to English, but Archer keeps switching it back to Spanish.
Indiana Wish and ‘the thrill of hope’
At first Archer babbled the way babies do.
“He always said ‘mommy,’” Olivia says. “We have a video of him saying it once.”
Then the stroke. He doesn’t talk anymore, but he has beautiful brown eyes and a very expressive face; he makes his point clear. But there are days when it’s all too much – another attack, more pain and frustration – and Archer is left in bed, irritable or worse, in pain.
Indiana Wish knew those moments and bought Archer an adjustable rocking chair. The pillow is the softest material ever – like a bed of Hawaiian rolls, the family calls it – and the rocking motion can soothe him. This happened a few weeks ago:
“Archer was having one of those days,” Olivia says. “Pneumonia and a heartbreaking attack day, and that left him so exhausted he couldn’t lift his head.
“I put up a Christmas tree. He really likes light. I could hear him screaming in his medical bed, nothing helped him, and I had Christmas music in the background, songs about a God who loved humanity so much. He came down and suffered for us. All my life I always believed that, but I was having a hard time that day. It’s so hard when you have a child with a progressive disease that causes so much pain, and you can’t fix it. I struggled to believe that God is with us.
“I got Archer out of bed and laid him over the rocking chair. He was lying on those Hawaiian rolls, and at first he had a hard time visually processing the tree. I started rocking him, and he sighed and stopped screaming. A faint, beautiful smile appeared on his lips. Seeing him comforted in his pain reminded me: I am not alone, and God is with us.
“I felt the sensation of hope,” she continues. “’A weary mother rejoices’ – it’s so true. Indiana Wish truly brings hope to families. I couldn’t be more grateful.”
They pay it as best they can, Archer’s parents. If you ask around, you learn that Olivia works part-time at a local supermarket, where she quietly uses her employee discount to help other tired mothers with their purchases. Ask around and you’ll discover that Jesse left the church not because he lost his passion to serve, but because he found a passion to serve in a different way: He’s going to nursing school and still has a year left . He wants to work in the neonatal intensive care unit. The NICU is a lonely place for parents – and can often be more difficult for the father than for the mother – and Jesse wants to help.
They are one of 3,500 Indiana Wish families who have granted a wish since 1984. You can help by visiting www.indianawish.org.
Find IndyStar columnist Gregg Doyel at Wiresor on Blue Sky and Twitter on @GreggDoyelStaror at www.facebook.com/greggdoyelstar.
How you can help
This is the second installment of IndyStar columnist Gregg Doyel’s annual holiday series on Indiana Wish, an Indianapolis-based nonprofit that has granted more than 3,500 wishes for children ages 3 to 18 with life-threatening or terminal illnesses has been determined. The average cost of a wish is $12,000. To help support Indiana Wish, visit www.indianawish.org/donate/
More: Join the text conversation with sports columnist Gregg Doyel for insights, reader questions and Doyel’s behind-the-scenes look.
