Ashland Family Copes with Hurler's Syndrome

1 decade 2 years 6 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
SPRINGFIELD (AP) — A jury has found a Wisconsin man guilty of first-degree murder for killing a Missouri mother who... More >>
5 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 9:47:00 PM CST November 16, 2018 in News
COLUMBIA - Families filled empty shoeboxes with hygiene products, school supplies, clothes, shoes and toys for children in need at... More >>
6 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 8:04:00 PM CST November 16, 2018 in News
COLUMBIA - The price of a typical Thanksgiving meal in Missouri is a full $5.25 higher than the national average.... More >>
7 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 7:18:00 PM CST November 16, 2018 in News
JEFFERSON CITY - The nature of Twitter and how government officials use it was at the heart of a hearing... More >>
10 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 4:11:00 PM CST November 16, 2018 in News
ST. LOUIS - The University of Missouri Board of Curators announced cuts to costs Friday to help with enrollment at... More >>
11 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 3:24:00 PM CST November 16, 2018 in News
(CNN) -- USA Gymnastics' longtime chief operating officer has resigned, the organization said Friday, becoming the latest in a string... More >>
11 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 2:56:27 PM CST November 16, 2018 in News
COLUMBIA- A tree in downtown Columbia became the target of vandalism Thursday night when two men were caught on camera... More >>
12 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 2:49:00 PM CST November 16, 2018 in News
COLUMBIA - Several groups in the City of Columbia are working to regulate and tax short-term rentals, such as Airbnb's.... More >>
13 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 1:18:00 PM CST November 16, 2018 in News
COLUMBIA - A man suspected of stealing more than $46,000 from the Boone County Treasurer's Office in late 2017 is... More >>
14 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 12:21:00 PM CST November 16, 2018 in News
COLUMBIA - Police arrested Dyran Hill, 23, of Columbia in connection with a robbery Thursday in the parking lot of... More >>
14 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 12:11:00 PM CST November 16, 2018 in News
(CNN) -- The Department of Education on Friday proposed new rules for dealing with sexual harassment and assault on college... More >>
14 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 11:55:52 AM CST November 16, 2018 in News
NEW YORK (AP) — Jennie-O Turkey recalled packages of ground turkey in a salmonella outbreak, and regulators say additional products... More >>
15 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 10:58:02 AM CST November 16, 2018 in News
JEFFERSON CITY - The week around Thanksgiving is one of the busiest travel periods in the year. AAA projects... More >>
16 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 10:16:00 AM CST November 16, 2018 in News
WASHINGTON, DC - The White House says it will "temporarily reinstate" the White House press credentials of CNN reporter Jim... More >>
17 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 9:40:00 AM CST November 16, 2018 in News
MOBERLY - A pedestrian was struck and killed Thursday night on Highway 63 just south of Moberly, according to crash... More >>
22 hours ago Friday, November 16 2018 Nov 16, 2018 Friday, November 16, 2018 4:49:00 AM CST November 16, 2018 in News
COLUMBIA- Out-of-state vehicles around the University of Missouri are having their license plates stolen. It’s been happening in garages... More >>
1 day ago Thursday, November 15 2018 Nov 15, 2018 Thursday, November 15, 2018 7:17:00 PM CST November 15, 2018 in News
CENTRALIA - Where would a man celebrating a half century of giving blood go to celebrate? Another blood drive... More >>
1 day ago Thursday, November 15 2018 Nov 15, 2018 Thursday, November 15, 2018 5:55:00 PM CST November 15, 2018 in News
COLUMBIA- In a meeting this afternoon, Columbia City Manager Mike Matthes, apologized for the confusion surrounding the Columbia Police Department’s... More >>
1 day ago Thursday, November 15 2018 Nov 15, 2018 Thursday, November 15, 2018 5:17:00 PM CST November 15, 2018 in News
Columbia, MO
Broken Clouds 37°
3am 34°
4am 34°
5am 34°
6am 35°