LAS CRUCES - Looking at Gabriella "Bella" Bruggemann, you wouldn’t guess she is sick. She seems like any 6 year old — smart, sassy and happy. But Bella was born with biliary atresia and congenital abnormalities.
   Biliary atresia is a life-threatening condition in infants in which the bile ducts (tubes that carry bile from the liver to the gallbladder and the small intestine) inside or outside the liver do not have normal openings, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
   When Bella was 3 weeks old, she had her first surgery, and it won’t be her last. In the next couple of months, Bella is expected to get a new liver, a common treatment for biliary atresia. Bella and her family recently made the trek from Las Cruces to Atlanta, where they must await a call from the Children's Healthcare of Atlanta at Egleston telling them “it’s time.” Once the call comes, the family has four hours to get to the hospital and get Bella prepped in time for the transplant.
"We could get the call at any time," said Bella's mother Laura Bruggemann. "We cannot leave our phones on silent, just in case the call comes."
   While Bella doesn’t live a normal life, her parents do their best to make sure she thinks so.
“She’s never known any different," Laura Bruggemann said. "She’s only known pain her whole life."
   Bella gets tired easily and is in mild to moderate pain all the time. She endures frequent lab draws, which have slowed to once every two to three months, and she has a special diet. She is now down to taking “only” six pills a day, and she’s accustomed to getting shots.
   In order to get her used to these things, Laura Bruggemann has been taking her daughter to the doctor with her family. If Bella's grandma had to get a flu shot, Bella's mother used it as an opportunity to show Bella that it isn't scary.


   Bella, 6, stands in the foreground with her father Jeremy Bruggemann, baby sister Ava and her mother Laura Bruggemann in the background. Bella is currently in Atlanta, Georgia, where she is on a waiting list for a liver transplant. (Photo: Courtesy photo)
   Throughout all of this, Bella still is just a child. She attends Sonoma Elementary School in Las Cruces, plays with friends and loves to jump in puddles, just like everyone else who doesn’t live with constant pain.
   "We've done a really good job of normalizing the situation for her, to the point that I think she can't quite comprehend the severity, which is good because the burden should lie on the parents and not the child," Laura Bruggemann said. "We want her to be free to live her life as a normal 6 year old."

Getting technical... Bella’s gastrointestinal tract is flipped. Her spleens (a few of them), liver and appendix are not on the side of her body where they are normally found. When she was 3 weeks old, a surgeon took pieces of her intestine and used those to create new ducts into and out of her liver, because the existing ones had scar tissue, blocking entry and exit. Her liver ducts are doing fine now, but doctors recently discovered a tumor on the liver. There was a concern that it could be cancerous, so they began planning a transplant. Bella's other conditions make a liver donation from her family incompatible.
   "Upon our arrival (to Atlanta), we were here maybe about three days and she was hospitalized and during that hospitalization, she had a an MRI," Laura Bruggemann said. "We knew she had a spot on her liver but prior to that, we didn't know whether it was cancerous and we found out (Oct. 25) that it was indeed cancer."
   Because Bella's need for a liver transplant has become even more necessary, the transplant team will be asking to double her PELD (pediatric end-stage liver disease) score, a disease severity scoring system, in order to move her higher up on the waiting list for a transplant.
   Bella has been on the waiting list since Oct. 11. The average wait time is about three months, her mother said.
"We're hopeful, but in a case like this, it's always bittersweet," she said. "From someone else's pain, your child is given life."
Bella’s Butterflies
   Illnesses like these are difficult for anyone to go through. Despite having jobs and the support of family and friends, the process is draining on a family, not only physically and emotionally, but also financially. Thinking positively is what helps them get through each day.
   “Bad things happen to lots of people," said Bella's father Jeremy Bruggemann. "Why should we be the exception?”
Through the Children’s Organ Transplant Association (COTA), the Bruggemann family has created an account in Bella’s name. This allows people to make donations toward the family’s ever-increasing medical bills. Because the family set up a COTA account, each dollar donated will go solely to cover Bella’s medical bills — unlike some sites that take a percentage of contributions.
   The family is also selling T-shirts and hoodies with the Bella's Butterflies logo on them to raise money for the cause. The idea for a fundraising campaign called Bella's Butterflies came about because Bella's favorite insect the butterfly. A family friend designed the logo, Laura Bruggemann said.
   The Bruggemanns are hoping to raise $35,000 to help cover the cost of the transplant. As of late October, the family has raised more than $16,000, Laura Bruggemann said.
   "We've been really grateful for people's financial and emotional generosity," she said. "Even though we're thousands of miles away, we really feel the support of our community."
   Laura Bruggemann said her family is hopeful that Bella will be able to lead a normal life after the transplant, with increased energy and no pain.
   The Bruggemann family will continue to raise money for Bella's medical expenses for as long as they are needed, Laura Bruggemann said.
   "Hopefully the transplant will take care of the cancer and it will remove it and it will not spread," she said. "But if that's not the case, there's a chance for incurring a lot more costs."
   To make a donation, visit cota.donorpages.com/PatientOnlineDonation/COTAforGabriellaB/.
   To buy a Bella's Butterflies T-shirt or hoodie, visit bonfirefunds.com/bellas-butterflies-1. 
   For updates on Bella's progress, visit Bella's Butterflies — A Liver Transplant Journey on Facebook.

Rachel Courtney is a friend of the Bruggemann family and the marketing director at Horse N Hound Feed N Supply. She may be reached at rachel@horsenhoundfeed.com. Alexia Severson is a features reporter and may be reached at 575-541-5462 and aseverson@lcsun-news.com. Follow her @AlexiaMSeverson on Twitter. 

Bella's family is selling T-shirts and hoodies with the Bella's Butterflies logo on them to raise money for the cause. (Photo: Courtesy)

Bella's Butterflies What: Bella Bruggemann was diagnosed with biliary atresia at 3 weeks old and is in need of a liver transplant. 

All fundraising will be for the Children's Organ Transplant Association for Bella's transplant related expenses.

Let's line the streets of our town and show our support for the Deming High School Wildcat Marching Band as they make their way to compete at Tournament of Bands!
 
Our goal is to line Nickel street (starting at Wildcat Drive in front of the high school) and hopefully make it to Pine street and Gold/I-10 (by Walgreens).
Start parking and lining up at approximately 8:00am, the estimated departure time for the band is 8:20am. Bring your posters, and banners! Bring your Wildcat flags, some balloons, and wear our school colors! Bring your Wildcat Pride!
 
These students work hard every single day and put in so much work and dedication into an activity that doesn't really get the recognition it deserves. They endure summer band camp. They meet for Zero-Hour at 7:45am. They rehearse until late in the evening. They literally put in their blood, sweat, and tears into something they love to do, all for this one performance. The one opportunity to show the judges what they are capable of doing. The opportunity to be the best marching band in the state of New Mexico!
 
Come out and show them your support! Show them your Wildcat Spirit! Give them the proper send-off to the most important performance of their marching band season!
Saturday, November 7th, 2015 at approximately 8:00am. Nickel street, Pine street, Gold street by I-10!