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The Pauling Family’s Rice Hospice Journey

Published in Hospice Services, Patient Story

“She taught us all to be strong”
Katelyn Pauling impacted a lot of lives during her short eight years. She was an outgoing girl who loved to giggle, ride horse, and drink blue slushies. More than anything, she was strong, and that’s a legacy she left for all those who knew her. Be strong and continue on. It’s a lesson her family embraces each and every day.

Katelyn Faith was born on September 19, 2006 to Jeremy and Kristy Pauling. Her two older sisters, Kaylee and Kassey, adored her and could always get Katelyn to smile and giggle.

When Katelyn started having seizures at age two, the doctor told them it was probably epilepsy and she would likely outgrow it. Unfortunately, that wasn’t the case. Katelyn continued to have seizures, and by the time she was five, she had lost her ability to walk or talk.

Kristy’s mother mentioned that a distant cousin had died from a rare neurologic disorder called Batten Disease. They had never heard of it before, so they met with a genetic specialist who evaluated Katelyn’s condition and conducted the necessary tests. Not long after, Katelyn’s diagnosis was confirmed. It was Batten’s.

Batten Disease robbed Katelyn of her ability to run and jump and play, but it never robbed her of her personality. She loved school and had many friends at Ramsey and Sanford Elementary in Montevideo. On the days she wasn’t well enough to attend school, her teachers and classmates missed her and were always excited when she returned to class.

“It’s amazing how she impacted people,” her mom Kristy said. “A lot of her classmates at school didn’t know what was going on. They just treated her like normal because that WAS her normal. And they were fine with that.”

More than anything, Katelyn loved riding horses on their family farm. She especially loved her pony, Baby, who would always come over and give her a nudge whenever she sat in her wheelchair by the fence. “When we got her the pony, that’s all she could say… baby… so that’s what we decided to name him,” Kristy said.

Kristy and Jeremy were always open and honest with their other two daughters about Katelyn’s condition. Kristy, a Registered Nurse, felt it was important that Kaylee and Kassey knew the truth. They were always very involved in Katelyn’s care, and they often accompanied Kristy to doctor’s appointments. “They were as big of caregivers as my husband and I were,” Kristy said.

Carris Health Hospice became involved with the Pauling family in January of 2015. Tammy Kruse was assigned as their Hospice Aide, a person Kristy credits as her “lifesaver.” “When you try to work and have a special needs child, plus you have other kids who are involved in everything, it takes a team to get everything together. When Tammy started, I felt like my house was a mess. She told me, ‘I’ll just start and you don’t worry about it.’ She knew just what to do.”

Kristy and Jeremy also credit their Rice Hospice Social Worker, Lindsey, with being an important part of their care team. “Lindsey did such a good job with our other kids,” Kristy said. “She brought them books, and they always knew what the end was going to be.” Lindsey helped their older daughters get their feelings out so they could talk together as a family. “They have adjusted very well,” she added.

Rice Hospice Nurse Kris Benson, R.N., was also an important part of the team. She facilitated a meeting between Kristy and school officials to help plan Katelyn’s care, and also met with extended family to help them understand and prepare for Katelyn’s passing.

When Katelyn was no longer able to attend school, teachers and staff planned a goodbye party for her and her classmates. They made her a book of pictures and sang “The Friend Song” so they could all tell Katelyn how much they would miss her.

Katelyn passed away on March 20, 2015. Kris and Lindsey were both there. “It was a privilege for us to know Katelyn and her family, and to make their experience a little easier during such an incredibly difficult time in their lives,” said Kris.

The Paulings started a non-profit organization in Katelyn’s memory called “Katelyn’s Faith.” Money raised goes to Batten’s research, and to support the siblings of other Batten’s kids.