Ashland Family Copes with Hurler's Syndrome

1 decade 3 years 5 months ago Thursday, May 04 2006 May 4, 2006 Thursday, May 04, 2006 7:36:17 PM CDT May 04, 2006 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.

More News

Grid
List
COLUMBIA - Maries County sheriff's deputies said a drunk driver was to blame in a fatal car crash from early... More >>
3 hours ago Sunday, October 13 2019 Oct 13, 2019 Sunday, October 13, 2019 8:46:00 PM CDT October 13, 2019 in News
COLUMBIA - Drivers on I-70 westbound saw 2 mile long delays around mile marker 124 when the Missouri State Highway... More >>
8 hours ago Sunday, October 13 2019 Oct 13, 2019 Sunday, October 13, 2019 4:18:00 PM CDT October 13, 2019 in News
ROCHEPORT - The Missouri Department of Natural Resources said the number of people using the Katy Trail is down by... More >>
9 hours ago Sunday, October 13 2019 Oct 13, 2019 Sunday, October 13, 2019 3:08:00 PM CDT October 13, 2019 in News
COLUMBIA - The CDC began monitoring the 2019-2020 flu season this weekend. And doctors are urging people to get their... More >>
9 hours ago Sunday, October 13 2019 Oct 13, 2019 Sunday, October 13, 2019 2:55:00 PM CDT October 13, 2019 in Continuous News
COLUMBIA — Six Columbia churches had their first Sunday service with improved emergency health precautions on Oct. 13. The... More >>
10 hours ago Sunday, October 13 2019 Oct 13, 2019 Sunday, October 13, 2019 2:00:00 PM CDT October 13, 2019 in News
HARSTBURG – Celebrating another fall season with pumpkin carving, hayrides and a straw maze, the 28th annual Hartsburg Pumpkin Festival... More >>
16 hours ago Sunday, October 13 2019 Oct 13, 2019 Sunday, October 13, 2019 8:00:00 AM CDT October 13, 2019 in News
TOKYO (AP) — A heavy downpour and strong winds pounded Tokyo and surrounding areas on Saturday as a powerful typhoon... More >>
1 day ago Saturday, October 12 2019 Oct 12, 2019 Saturday, October 12, 2019 8:03:00 PM CDT October 12, 2019 in News
LILBOURN, Mo. (AP) — A small earthquake has been reported in southeastern Missouri. The U.S. Geological Survey says... More >>
1 day ago Saturday, October 12 2019 Oct 12, 2019 Saturday, October 12, 2019 7:41:00 PM CDT October 12, 2019 in News
COLUMBIA — One person died after a crash in Cooper County Saturday morning. Haven Pennington, 19, drove her Pontiac... More >>
1 day ago Saturday, October 12 2019 Oct 12, 2019 Saturday, October 12, 2019 4:55:00 PM CDT October 12, 2019 in News
There is 5:40 left in the game. North Kansas City's Ronaldo Calderon kicks a field goal to give the... More >>
1 day ago Saturday, October 12 2019 Oct 12, 2019 Saturday, October 12, 2019 12:36:00 PM CDT October 12, 2019 in News
JEFFERSON CITY — The dome of the Missouri Capitol building will be lit pink in honor of breast cancer... More >>
1 day ago Saturday, October 12 2019 Oct 12, 2019 Saturday, October 12, 2019 12:08:00 PM CDT October 12, 2019 in News
HARTSBURG - The Hartsburg Pumpkin Festival announced parking will be moved to the river roads near the festival grounds. ... More >>
1 day ago Saturday, October 12 2019 Oct 12, 2019 Saturday, October 12, 2019 5:50:44 AM CDT October 12, 2019 in News
COLUMBIA - A Columbia man is behind bars after a search warrant turned up illegal drugs and and a firearm.... More >>
2 days ago Friday, October 11 2019 Oct 11, 2019 Friday, October 11, 2019 10:07:00 PM CDT October 11, 2019 in News
COLUMBIA - Below are scores from football games around mid-Missouri. Final scores are in bold. ... More >>
2 days ago Friday, October 11 2019 Oct 11, 2019 Friday, October 11, 2019 6:39:00 PM CDT October 11, 2019 in Friday Night Fever
COLUMBIA - Friday Night Fever’s Week 7 Game of the Week features an interesting game between a traveling Rockhurst (3-3)... More >>
2 days ago Friday, October 11 2019 Oct 11, 2019 Friday, October 11, 2019 6:10:00 PM CDT October 11, 2019 in Friday Night Fever
COLUMBIA - The Columbia Police Department is asking for the public’s help locating 28-year-old Mengqi Ji Elledge. Elledge was... More >>
2 days ago Friday, October 11 2019 Oct 11, 2019 Friday, October 11, 2019 4:38:00 PM CDT October 11, 2019 in News
NEW FLORENCE - The Missouri State Highway Patrol awarded Randy Nordman and his widow Julie Nordman with the department's highest... More >>
2 days ago Friday, October 11 2019 Oct 11, 2019 Friday, October 11, 2019 3:52:00 PM CDT October 11, 2019 in News
CALIFORNIA - The Moniteau County Sheriff’s Office and the California Police Department made contact with people in two vehicles that... More >>
2 days ago Friday, October 11 2019 Oct 11, 2019 Friday, October 11, 2019 1:59:00 PM CDT October 11, 2019 in News
Columbia, MO
Broken Clouds 50°
1am 46°
2am 45°
3am 44°
4am 40°