Ashland Family Copes with Hurler's Syndrome

1 decade 2 years 4 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
ST. LOUIS (AP) — Emissions near a troubled St. Louis County landfill once posed health concerns for workers and nearby... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 5:02:52 PM CDT September 21, 2018 in News
JOPLIN (AP) — Missouri Southern State University has abandoned plans for a dental school that would've operated in partnership with... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 4:51:59 PM CDT September 21, 2018 in News
ST. LOUIS (AP) — Some St. Louis police officers are still struggling with injuries more than a year after protesters... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 4:44:27 PM CDT September 21, 2018 in News
COLUMBIA - Columbia police said a fifth arrest has been made in connection with an alleged homicide on Sylvan Lane... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 3:50:00 PM CDT September 21, 2018 in News
JEFFERSON CITY - Police arrested a man early Friday after reportedly finding him outside an apartment complex, looking into a... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 3:27:00 PM CDT September 21, 2018 in News
KANSAS CITY - The Missouri Western District Court of Appeals ruled Friday to allow the Clean Missouri Initiative to stay... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 2:53:00 PM CDT September 21, 2018 in News
COLUMBIA – MU is one of only two Southeastern Conference universities to experience double-digit growth in new freshmen, while several... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 1:12:00 PM CDT September 21, 2018 in News
SPRINGFIELD - President Donald Trump is set to campaign at the JQH Arena for U.S. Senate candidate Josh Hawley,... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 12:43:00 PM CDT September 21, 2018 in News
COLUMBIA - The University of Missouri Board of Curators announced a resolution Friday supporting the University of Missouri-Columbia's efforts to... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 11:23:00 AM CDT September 21, 2018 in News
COLUMBIA - 82,000 Americans are still missing as the result of our country's biggest wars. POW/MIA Recognition Day is... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 10:59:00 AM CDT September 21, 2018 in News
COLUMBIA - The Columbia Planned Parenthood clinic will stop abortion services after Oct. 1 following a court ruling allowing the... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 10:20:00 AM CDT September 21, 2018 in News
WASHINGTON (AP) — President Donald Trump challenged the woman accusing his Supreme Court nominee of sexual assault by name Friday,... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 9:31:00 AM CDT September 21, 2018 in News
FERGUSON, Mo. (AP) — The daughter of an 84-year-old woman with dementia alleges in a lawsuit that... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 8:45:00 AM CDT September 21, 2018 in News
VIENNA - 27 year-old Anthony Macclugage has been charged with endangering the welfare of a child, felony Domestic Assault and... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 6:22:00 AM CDT September 21, 2018 in News
CHARLESTON, W.Va. (AP) — Attorneys general from West Virginia and 10 other states are asking the U.S.... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 5:34:37 AM CDT September 21, 2018 in News
(CNN) -- From January 2016 through February 2018, puppies sold at six pet store companies led to infections in 118... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 4:26:41 AM CDT September 21, 2018 in News
JEFFERSON CITY - Missouri's Stop Human Trafficking Coalition's 2018 conference is taking place this weekend and is a reminder that... More >>
2 days ago Friday, September 21 2018 Sep 21, 2018 Friday, September 21, 2018 2:54:00 AM CDT September 21, 2018 in News
COLUMBIA - MU's School of Health Professions will be crafting a new curriculum starting Friday after the MU Board of... More >>
2 days ago Thursday, September 20 2018 Sep 20, 2018 Thursday, September 20, 2018 8:04:00 PM CDT September 20, 2018 in News
Columbia, MO
Broken Clouds 73°
8pm 70°
9pm 68°
10pm 66°
11pm 65°