The Hildebrandt family gathers together Thursday night at their home north of Craig. The family includes, back row from left, Keenan, 9, Tyler, 14, Katelynn, 12, Todd, Tiffany, 7, and Kathy.

Photo by Hans Hallgren

The Hildebrandt family gathers together Thursday night at their home north of Craig. The family includes, back row from left, Keenan, 9, Tyler, 14, Katelynn, 12, Todd, Tiffany, 7, and Kathy.

'She touches people'

Local family cares for child with rare genetic condition


— It was 1996 and Craig resident Kathy Hildebrandt was struggling to accept a reality that would change her family's life.

Her daughter, Katelynn, was born with what doctors later identified as Seckel syndrome. As a result of the rare genetic defect, Katelynn, now 12, eats through a feeding tube and occasionally has seizures.

"It was really hard in the beginning," Kathy said. "I was angry when she was born not healthy.

"I was quite angry - not willing to accept it."

As time passed, however, the anger eased and turned into gratitude.

"My heart started softening," she said, "and I started to be a little less selfish and started opening up my eyes to how God was going to bless us through her."

Eventually, a promise of blessing blossomed into reality.

"She is just so sweet," Kathy said. "Everyone who knows her falls in love with her."

Seckel syndrome is an autosomal recessive disorder, which means both Kathy and her husband, Todd, carry the gene for the disorder but don't have its symptoms. The defect is often accompanied by dwarfism and mental retardation, according to the Web site for the National Organization for Rare Disorders.

Seckel syndrome has given Katelynn distinctions that make her different, in some respects, to other children her age.

Her head and brain is smaller than normal, Kathy said.

As a result, Katelynn cannot swallow and must be carried from room to room.

"With Katelynn, it's like having an infant that never grows up," Kathy said. "She can't do anything for herself."

In some cases, the Hildebrandts can't help but stand out in a crowd.

"Of course, you get noticed," Kathy said, recalling a recent trip to Chicago, where Kathy and Todd and their four children attended a wedding.

Expressions on the faces the family encountered showed that they noticed Katelynn's condition, Kathy said.

"We just smiled," she said, "then they would smile, then they would watch her a little longer. You could just see they had a sweetness come out of them or something.

"She touches people."

In caring for Katelynn, the Hildebrandts have routines that few other families keep. Todd and Kathy carry her from room to room in the house and use a stroller to move her outside.

The family plans to sell their home north of Craig to find a house that better suits Katelynn's needs, Kathy said.

"It's hard," she said. "It's a challenge sometimes. When she's sick, it's really hard and our family has to adjust."

Kathy credited one source for helping her cope with the situation.

"Todd and I are very strong Christians," she said. "We pray about it. God is our rock.

"There's just no other way around that."

Todd agreed, adding that the couple's relationship is also of high importance.

"We work pretty hard at maintaining our marriage relationship," he said.

Katelynn's contribution to the family also brings relief in tense situations.

"Our family can be under a little bit of stress," Kathy said. "The kids are being naughty : and they're not listening and we're having to discipline - and she thinks its funny so she'll start laughing."

The effect is contagious.

"So then we all start laughing," Kathy said. "I don't know how many times she's eased a stressful situation in our family just from making us all laugh."

In the end, Todd said, the family works together to care for Katelynn.

"We do this as a team," he said. "The kids really help a lot."

Deb Schneider, Horizons Specialized Services day program coordinator, experiences some of the same challenges as the Hildebrandts.

Schneider coordinates activities for Horizons clients who have a variety of conditions, including Down Syndrome and autism.

Some clients live in group homes, she said, under the care of Horizons' staff members.

Schneider said her work can sometimes become exhausting.

Yet, she said, she steps back when her job becomes difficult.

"There's always a way to take a moment and be still, be quiet," she said.

The satisfaction of her occupation, she said, comes from seeing progress, whether it includes watching a client finish a puzzle or keeping a steady job.

Schneider acknowledged that parents of children with various disabilities have challenges in front of them.

Her recommendation: "Always look for help or assistance and get advice," she said."


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