By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
Imagine hearing these words: Your child might never walk, your child might never talk, your child might never live independently.
You could focus on those nevers – or like one Brownsburg family, you can focus on those things that will always be true – love, commitment and possibility.
That’s how Jesse and Olivia Ruzic have chosen to live their life with a son who has had one tough diagnosis after another.
“You hear so many nevers, and those nevers can be overwhelming,” Olivia Ruzic said, struggling to keep her emotions in check.
“We focus on what is always. In our family, Archer is always going to be loved. We will always find a way for him to connect with the world, and there will always be growth. There will always be little victories. Maybe he had a ton of seizures last night, but I got one smile today.”
Archer, who is nonverbal but has a beautiful smile and a hearty laugh, also has a big brother named Jack, who his parents joke identifies as a T-rex.
“Archer is kind of like a chill sloth, and Jack is like a hyper puppy or a caffeinated dinosaur, so the combo is interesting,” Jesse Ruzic said as he watched his younger son play independently with musical toys in their Brownsburg home.
Now 2½, Archer has a long list of medical challenges that prompted his parents to uproot their family from their Michigan home amid the COVID-19 pandemic to seek answers at Riley Hospital for Children.
He was born in Michigan in March 2020. As if the unfolding of a deadly pandemic wasn’t frightening enough at that time, the Ruzics’ little boy soon developed multiple problems, starting with open-heart surgery for coarctation of the aorta when he was just 5 days old.
That was followed by one setback after another, including a stroke at 6 months old after he underwent surgery to place a G-tube for feedings.
“We were devastated, but thousands of people around the world were praying for him,” Olivia said.
At the time, Jesse was the youth pastor for a Michigan church.
“After our experience with the stroke and all these medical mysteries, we couldn’t shake the feeling that something deeper was going on, and we wanted to prevent something else from happening,” Olivia said.
Olivia, who had lived in Franklin as a child, knew about Riley but did her due diligence before they agreed that Jesse would quit his job after she found a job in the Indianapolis area.
“Before coming to Riley, no physician could figure out all of Archer's severe medical issues, including congenital heart disease, hypothyroidism, hypotonia, kidney malformation, eating difficulties and a thalamic stroke that nearly killed him after a routine operation when he was only 6 months old,” the young mom said.
It took a visit with Riley neurologist Dr. Celanie Christensen, who has a background in genetics, to get a hint at the first diagnosis – Kabuki syndrome, a rare, multisystem disorder characterized by distinctive facial features, growth delays, skeletal abnormalities, organ problems and varying degrees of intellectual differences.
In her first appointment with Archer late in 2020, Dr. Christensen recognized features and symptoms of Kabuki syndrome, Olivia recalled. October is Kabuki Syndrome Awareness Month.
“She quickly and compassionately got us the genetic testing we needed to secure a diagnosis. In that same month, when Archer developed strange movements, Dr. Christensen promptly diagnosed and treated him for a serious, progressive type of epilepsy called infantile spasms.”
As their son was being treated for the spasms, the Ruzics got the results from Riley genetics. Archer definitely had Kabuki syndrome, but he also had an RYR-1 muscle mutation. Both of his parents were carriers for the disease, but neither knew they carried it because their first son was born healthy.
In their meeting with Riley geneticist Dr. Gabrielle Geddes, the couple realized that their medical journey with their son was just beginning.
PROGRESS AND SETBACKS
“Dr. Geddes and her team were so kind to us when we finally received the results of his genetic testing,” Olivia said. “She and Dr. Christensen have helped our family navigate the complexities of a rare dual-diagnosis with grace and diligence.”
Today, Archer sees 14 specialists at Riley and is undergoing five developmental therapies. He has recently been diagnosed with Lennox-Gastaut syndrome, an intractable form of epilepsy.
He receives immune infusions at home once a week for an immune deficiency disorder and continues receiving nourishment from a feeding tube, but he is mobile – crawling, standing and playing with toys, and he appears to connect visually and emotionally with people.
While she aches to hear her little boy say mama again like he did a couple times before, she understands that those milestones can be erased by seizures and brain injury.
“Our rubric for him is just joy and connecting with others – that’s our measure of success for him and for us as his parents,” Olivia said. “We’re really grateful to Riley genetics for giving us a diagnosis. It doesn’t define him, but it enables us to just love him well.”
SUPPORT FROM NICU NEST
The couple is also grateful to Riley’s NICU Nest program for its support and guidance during an especially challenging time after their move to Indiana.
A man of deep faith, Jesse called the move itself a “huge leap of faith” as they faced COVID, leaving a job and church community they loved, selling their house and starting over in a new city with two young boys.
“The transition was maybe the toughest few months of my life,” he said.
Beth DeHoff, financial resource coordinator for the NICU Nest Family Support Program, provided a mix of parent support and healthcare financing services, specifically getting a Medicaid waiver in place for Archer, finding a nursing agency and connecting the family with the parent caregiver program.
“As a parent, I’ve navigated these services for my own son, and I find it such a blessing to be able to help families find their way along this path,” DeHoff said.
“The Ruzics are a joy to support. They love their children fiercely, and they are willing to learn all they can about programs to support their son Archer. They are a great example of how parents and providers can partner to ensure their children are receiving the very best care.”
After struggling to find reliable in-home healthcare for their son, the couple agreed that Jesse would become his certified caregiver, allowing Olivia to continue working outside the home.
And now Jesse is pursuing an RN degree.
“The first time I got inspired to even think about nursing was when Archer was in the NICU and the cardiac ICU,” he said. “I thought, ‘Wow, what these people do here is pretty remarkable. They are keeping my son alive.’”
He doesn’t know where the nursing path will take him, but, he said, “I would be honored to work at Riley someday.”
KEEPING THE FAITH
His previous career as a youth pastor has trained him well in the art of compassion, and the couple’s faith continues to guide them as they navigate their son’s medical journey.
“We can’t fathom beginning to walk through or process this level of heaviness apart from knowing Christ and being connected to his church,” Jesse said. “Our community has supported us so well.”
As he watches his son play, he offers this advice to other parents:
“Value the connection with your child over any milestones or the life you envisioned for them. If they have you and connect with you and know they’re loved by you, I think that has to be the core of what you give them.”
“A life with love is never a low-quality life,” she said. “Just focus on those things that are always. Archer will always be loved.
“You can get tossed by the wind if you don’t focus on what is always.”
Photos by Mike Dickbernd, IU Health visual journalist, email@example.com