Heroes of Hope: An ACC Donor-Client Story

Early Intervention, The AmbassadorLeave a Comment

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The Red River Zoo in southwest Fargo is filled with eye-catching exhibits, ponds and flowing streams. Much to the delight of 3-year-old Kamden Bortz, it is also where you can find 300 exotic and native animals. Kamden’s mom, Kari, and his 4-year-old sister, Faith, are by his side for this adventure on a pleasant spring day. Kari Bortz is one of the most passionately hopeful people you’ll ever meet. It’s a virtue that may or may not come naturally to the Fargo woman, but now that it’s been tested—on operating tables and intensive care units, in painful silences and during sleepless nights— it is strong, and it is real.

Sequence 01.Still002The reason for Kari’s positive outlook is seated in a wheelchair, talking a mile a minute, and wearing a hand-woven Spider-Man hat. Kamden eagerly takes in his surroundings … his pale blue eyes animated. He provides a play-by-play of the leaping aerobatics of two White-faced Saki Monkeys, staring at him through the lobby vivarium glass. “He’s a little talker,” Kari says.

She takes off Kamden’s cap, brushes his sandy blond hair to the side, and smiles softly. “He is our one in 40,000.”

Medical miracle

Kamden was born with a rare genetic condition known as Prune Belly Syndrome. A congenital disorder of the urinary system, the syndrome is characterized by weak abdominal muscles and urinary tract problems. The syndrome affects one in every 40,000 births. During week 16 of Kari’s pregnancy, Kamden’s bladder ruptured. Kari and her husband, Francis, were told their little boy had a less than 5 percent chance of surviving. Then, on March 7—three days before Kari’s scheduled C-section—maternal-fetal medicine doctors discovered dangerously low levels of amniotic fluid in her womb, essential for a baby’s development of muscles, limbs, lungs and the digestive system. They needed to deliver immediately. “Before we began, the doctors told us one last time: most kids don’t make it,” Kari recounts. So, when Kamden was born and his cries filled the air, it was music to his mom’s ears.[quote_box_center] “The doctor was getting choked up. I don’t remember how I reacted … all I remember is listening to him … listening to him cry.”[/quote_box_center]

Now, three years and several major surgeries later, they are at the zoo, smiling and laughing. They are also about to meet a person with whom they have a special connection … a person they have never met before.

On a mission

Karen Skjold has been a financial supporter of the Anne Carlsen Center (ACC) for the last two years. A realtor in the Fargo-Moorhead area, she has a sharp wit and an abounding sincerity. Karen’s motivation to give to ACC began at a family reunion, where she was introduced to a distant relative whose teenage son has special needs. She watched the mother struggle to control the young man’s behaviors, and recognized that both parents were overwhelmed by the stresses of caring for their child … and trying to meet his needs.

The family needed help, so they turned to the Anne Carlsen Center for residential and educational services. Their son now receives individualized support on the ACC campus in Jamestown. The parents are now filled with hope. “The next time I saw them,” says Karen, “they were light.” The decision to have a young child move away from home is one that is painfully difficult, but Karen says, when the parents saw how happy their son was, “they could be ok, because he loved where he was.” A helping hand Kari can relate to how difficult it is to ask for help. “It was a hurdle for my husband and me, and it took a while to overcome,” she says. “It is truly ok to lean on others—in this case, it has made us better parents.” Fortunately, for Kari and Francis, the expert upon whom they would lean is one of the best in her field: Occupational Therapist Beth Schaible.

Schaible, who works in the Anne Carlsen Center’s Early Intervention Program in Fargo, quickly became part of the family. [quote_box_center]“She would be in our home weekly, and helped me through some very hard moments, as I noticed more and more milestones Kamden would try so hard to reach but would fall short of achieving,”[/quote_box_center] “She was also there with such understanding and support to cheer Kamden through milestones he would accomplish. It was crazy to me the amount of sincere care she had for every stage of Kamden’s development.” Chronicling the triumphs and challenges Kamden has faced throughout his young life is an emotional task, and more than once, Kari is moved to tears. It’s a poignant testament to how much she loves her son, and how difficult the journey has been.

Beautiful bond

Kamden laughs gleefully as he bobs atop the back of a silver wooden horse on the zoo’s carousel. Kari and Karen watch the young boy with delight. As the two women talk, a remarkable connection develops between them. “I felt such sincerity and understanding in her [Karen’s] voice and felt she really got our family’s story,” says Kari, looking back on the visit. “She was easily able to connect herself with us, just through being a mom, and through her experiences as a parent. I felt a warmth from her which truly touched my heart! It is so amazing to think of those who donate to fund these programs, which are priceless to me as a parent of a child with special needs.”

Sequence 01.Still016As the zoo visit comes to a close, it’s apparent that Karen is leaving with new insights as well: “I remember how emotionally exhausting it was to have two kids —two kids who didn’t need help and services. I mean, I didn’t have those things that needed to happen, and I remember being an exhausted mom. I can’t imagine how hard this would be. So, to hear her talk about her level of trust with someone, and that she knows that whoever comes into her home loves her kids and is going to take care of them in a way they need, because it requires special skill—that’s huge. That’s sort of amazing.”

What’s more amazing? Two strangers, coming together to share the experiences that have shaped their lives, and leaving with a newfound sense of appreciation for one another.

For Kari, the support of donors like Karen has enabled her family to find some balance in the daily stresses of busy schedules and unavoidable conflicts.

For Karen, meeting this little boy who’s endured so much trauma—yet is bursting with life and possibility— validates why she decided to give in the first place.

Uniting them both is the Anne Carlsen Center, where everyone who is touched by the Center’s mission belongs to a growing family that gives … and cares.