WACO, Texas — A Waco couple is hoping for a miracle after their 4-month-old daughter was diagnosed with a rare disease shortly after birth, but they have their local community behind them.
Hayes and Adrianna Harper welcomed little Marlee into the world on Nov. 21, 2018, a happy and seemingly healthy baby girl. When she was 5 weeks old, her parents got news that changed their lives. Marlee was diagnosed with biliary atresia – a rare liver disease.
In February, Marlee was approved for a liver transplant, but her parents have not yet found a donor. To make things more complicated, the day they find a match the parents must travel to the Texas Children's Hospital in Houston and stay in that area for several months waiting for their daughter to hopefully recover. Hayes Harper said the bills are already racking up.
"We didn't have enough saved up to support us for two to three months off of work, going to hospitals and going out of town," Harper said. "We blew through our savings."
That's when the couple's parents started working to get community support. Hayes Harper's mother worked with the Backyard Bar Stage and Grill to hold a fundraiser Sunday. More than a hundred people turned out to the benefit held by Miracles for Marlee. Multiple bands came out for free, local businesses raffled off guns and other items, the community created a silent auction, and the venue donated a portion of the food sales.
When the Waco Firefighters Association found out about the event, a representative came to the fundraiser with a $500 check for the family.
Hayes and Adrianna couldn't believe how much support they were given.
"This is definitely a miracle," Hayes Harper said. "This is way more than we ever expected. The people that donated, they donated so much more than we ever would have thought. This is a huge blessing to our family."
Hayes Harper said the family has to wait for several months for a liver to be available. He said the average wait is six months, but they had to be ready for a call in the next week and could wait an entire year. When they get the call, they have to relocate to Houston immediately.
Small, but fierce: 4-month-old Marlee courageously battles biliary atresia
"As soon as they call, we have a suitcase packed and we just have to throw it in the car and hit the road," Hayes Harper said. "We have thirty minutes to tell them that we accept it and we are on the way."
Once she receives a liver transplant, the Harper family will have to stay at the hospital for a month to six weeks as Marlee heals. Once released from the hospital, the family will have to stay in Houston to be close to doctors for at least 100 days.
Hayes Harper said the fundraiser would be everything they need to help them get to Houston and figure out their next step, but they are no stranger to that drive.
The funds collected from the benefit will go toward the cost of living while the family travels back and forth Houston for Marlee’s medical care and their extended stay once she has a donor.
Earlier this month, after an appointment in Houston, the Harpers learned that Marlee’s liver was getting firm and her health was slightly deteriorating, according to a Facebook post. However, Marlee’s weight was increasing, which means she’s one step closer to a transplant.
A PayPal account has been set up to help support the family. If you’d like to donate, click here.
What is biliary atresia?
Biliary atresia is a rare disease of the liver and bile ducts that occurs in infants, according to cincinnatichildrens.org.
Cells within the liver produce a liquid called bile, which helps to digest fat and carry waste from the liver to the intestines to be expelled, according to cincinnatichildrens.org. The network of channels and ducts is called the biliary system. When the biliary system is working the way it should, it lets the bile drain from the liver into the intestines, the website says.
For a baby with biliary atresia, bile flow from the liver to the gallbladder is blocked, which causes the bile to be trapped inside the liver, which causes damage and scarring of the liver cells that leads to liver failure, according to cincinnatichildrens.org.
What are symptoms of biliary atresia?
Babies with biliary atresia seem healthy when they are born. Symptoms usually appear within the first two weeks to two months of life and include:
- Jaundice
- Dark urine
- Discolored stool: Usually a clay-like color, sometimes accompanied by a hard, swollen abdomen.
- Weight loss
- Irritability
How is biliary atresia treated?
Biliary atresia can’t be treated with medication. It can be treated by performing a surgery called the Kasai procedure which re-establish bile flow from the liver into the intestine, according to cincinnatichildrens.org.
The procedure has a 60 to 85 percent success rate, the website said.
By the time an infant is 4 months old, surgery is unlikely to be helpful and a liver transplant may be necessary.
How can you help Marlee and others like her?
Get tested to see if you are a match to be a living donor. You can fill out a confidential online health questionnaire on the Baylor Scott and White website to determine if you are a potential donor candidate.
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