Ashland Family Copes with Hurler's Syndrome

1 decade 1 year 2 weeks ago May 04, 2006 May 4, 2006 Thursday, May 04 2006 Thursday, May 04, 2006 7:36:17 PM CDT in News

Wyatt might be over-protective because Alana has a rare disease, Hurler's Syndrome, which prevents her body from producing enzymes.

"I can't even describe what it's like," said Alana's mother, Patti Cuddihee. "It's difficult. It's really hard. It affects everyone in the family, not just us."

Cuddihee described how her daughter fights the disease.

"Alana was transplanted with umbilical cord stem cells, so these were stem cells obtained from a live, healthy birth from a little girl somewhere in St. Louis whose mother donated the umbilical cord and saved Alana's life."

Alana can make enzymes now, thanks to that stem cell transplant, but she still faces serious problems.

"Day by day, that's all you can do, because things change," said Cuddihee. "Just when you think things are going well, then something will come up and it's a setback. And that's like two steps forward, one step back. It's truly how it is with these childhood illnesses."

Because of her chemotherapy, Alana does not eat in the usual way. Instead, she is hooked up to a pump that slowly feeds her formula over 10-12 hours during the night. She is almost through with her antibiotics, but her parents still worry.

"You think about it constantly," admitted Cuddihee. "You know, I can go to work and still wonder about her."

Alana's father continued, "Every minute, every other minute, because you never know if something can go wrong with the transplant, something bad could happen to her during the transplant," said Barner. "She can be here today and gone tomorrow."

Family trips are to Alana's transplant team in Minnesota.

"In a way, that's kind of our vacation," said Barner. "It's not much for a vacation, but we get away from everything here and it's just you and the kids."

Back home, their neighbors help, too.

"People in the community have been wonderful to us," Cuddihee added. "Local vets volunteer time and came out to work at my vet clinic when we were gone, which is the difference between me going out of business and me staying in business."

Through it all, the family learned a valuable lesson.

"We asked ourselves, 'How in the world can we repay what people have done for us?' And we finally came to the conclusion that we can't. We can repay people for their kindness and what they've done, but the fact is they don't want to be repaid," explained Cuddihee. "They did it because they wanted to help out, and the lesson is to pass it on for other people in need, and that's what it's all about."

Doctors have reduced Alana's checkups to once a month in Columbia and once a year in Minnesota with her transplant team.

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