By Steve Raymond
News Report Staff
Christian recording artist Mark Schultz wrote a song about seven years ago entitled “What It Means to be Loved.”
The chorus lyrics include:
I wanna give her the world
I wanna hold her hand
I wanna live every moment
I wanna show her what it means to be loved”
Annaka Robison has certainly experienced that love – from her parents, family, friends and a community.
This little one-year-old girl can’t walk or talk yet, but she has touched the hearts and lives of many.
The daughter of Josh and JaLana Robison was nearly a Christmas baby, born on December 18, 2015. Unfortunately, with numerous internal birth defects.
She has made more visits to the hospital in 12 months than most make in a lifetime. She has had to deal with omphalocele, biliary artresia, elevated bilirubin and polyspleenia – words most can’t even pronounce, much less understand.
Annaka has already had multiple surgeries with yet another very important procedure looming in the next two weeks.
Yet, she is a happy little girl, according to her parents.
“She’s very laid back,” Josh said in describing his daughter. “She doesn’t cry unless she’s hungry. She doesn’t feel good and there’s no way she can be comfortable, but she’s a happy kid. She doesn’t seem to know she’s even sick.”
But Annaka is sick.
She was born with omphalocele, meaning part of her small intestines was growing outside her body.
“But hers were small; something they could fix,” Josh noted. “They operated two days after she was born and was able to fix it. She healed quickly, and on New Year’s Day we were headed home thinking everything was pretty much fine.”
Less than two months later, in February, blood work revealed her bilirubin was elevated, indicating her liver wasn’t working properly. Tests, plus a liver biopsy, revealed Annaka has biliary atresia, a rare liver disease.
It means there aren’t enough liver ducts to move bile through the intestines and out of her body. Over time, this will be terminal.
In March, Annaka underwent another surgery – called a Kasai Procedure -- named after a Japanese surgeon. If successful, it would have possibly postponed the necessity for a liver transplant into her adolescence.
But by summer, the bilirubin was escalating again, suggesting her liver was failing and making the need for a liver transplant a high priority.
As Paul Harvey used to say, here’s “the rest of the story.”
As many already know, Josh and JaLana are good friends with Ryan and Nancy Ervin. They all teach in the Effingham School District and attend church together at New Hope. They have young children of similar ages that have grown up together and played together many times.
They are more like family than just friends.
“We’ve been friends for quite some time,”JaLana said. “We met at school through our jobs. It just clicked. It was a natural friendship.”
And after it was determined Annaka needed a liver transplant, the Robison’s found out the depth of that friendship.
“When JaLana told me Annaka needed the transplant, I asked what her blood type was,” Nancy recalled. “When she said it was O+, I got out my donor card and showed her I was O+, too.
“Since the transplant can come from a live donor, I told JaLana I would do it,” Nancy added. “I’d do anything she needed.”
As it turned out, dozens of friends and family members contacted St. Louis Children’s Hospital about being the volunteer donor. But when the many tests were completed, Nancy proved to be the best match for Annaka.
“Once they knew my blood type matched, they did an MRI to make sure my liver was healthy,” Nancy explained. “They also did an EKG, chest x-rays and more blood word to check for everything you can imagine. They wanted to make sure there were no abnormalities in my blood.”
By the end of the summer, Nancy was selected to be the donor. Actually, she is the back-up donor.
“The surgeons prefer a cadaver liver from a younger child,” Josh pointed out. “Sometimes the body’s acceptance of an adult liver doesn’t work as well.”
Everything seemed to be progressing until October.
“Since Annaka had so many internal birth defects, the surgeons in St. Louis decided her interior anatomy was too complicated for them,” Josh said. “They recommended we go to Pittsburgh for the transplant.”
So Annaka, JaLana and Nancy made the 500-mile trip east to the Steel City.
After more tests, it was determined Annaka can’t wait much longer for a cadaver. If one is not received, the transplant with Nancy will be performed on Tuesday, Jan. 3. The surgery will last between four and five hours.
Annaka will be at the Pittsburgh Children’s Hospital, while Nancy will be about five miles away at the University of Pittsburgh Hospital.
Approximately 20 percent of Nancy’s liver will be removed. It will come from the upper portion of the left side. Nancy explained that piece will never grow back, but the liver will expand to take the spot of the piece removed. That process will take between 8 and 12 weeks.
“When I asked Ryan about doing all this, he didn’t hesitate. He was totally supportive,” Nancy said. “We believe God has put us together with this group of friends for a reason. God is in control of this whole situation.
“They are such good friends,” she added. “If I can help lift some of their burden, I’m happy to do it. It’s something I would hope somebody would do for my children if needed.”
According to Josh, they will know within hours if Annaka’s body will accept the new liver.
She will then be given anti-rejection medicine that will prevent the body from attacking the new liver. But it will also compromise Annaka’s immune system, making her susceptible to germs.
“If the surgery is successful and Annaka’s body accepts the liver, she may go well into adulthood without needing another liver transplant,” Josh said. “And a lot of her other defects will correct themselves with a healthy liver.”
JoLana and Annaka will probably be in Pittsburgh two or three months. They hope to stay at a Ronald McDonald House.
Nancy is expecting to be in the hospital 7 to 10 days and then remain in Pittsburgh until the hospital releases her.
Before making that trip, however, both families will be celebrating Christmas.
“I’m planning to relax a little more than I normally would,” Nancy admitted. “I’m going to spend a lot of time with my two kiddos (Lincoln, 8; Myles, 16 months). This will be the first Christmas our youngest knows what’s going on. We’re looking forward to spending a lot of time together as a family.”
This will be Annaka’s first Christmas at home. A year ago, she was in the hospital. She will celebrate this year with her sister, Ellyana, 7; and brother, Wade, 5.
“Oftentimes, during the holidays, it’s easy to get wrapped up in gift-giving and all the things that make Christmas a busy time,” Josh said. “But all of this with Annaka is helping us focus on what Christmas really is.
“We certainly have a different perspective this Christmas,” JaLana added. “Annaka is getting a second chance at life. So it’s a different kind of Christmas, but that’s okay. It will be a good Christmas.”
Both families are very appreciative for the tremendous support received from the community and the school district. A special fundraiser for Annaka Friday night raised $21,240.
“The school district has been amazing,” Nancy said. “They have let us know we’re not in this by ourselves.”
“The support of family, friends and community has been unbelievable,” Josh continued. “It’s almost as if the community has adopted Annaka.”
As for Nancy’s willingness to donate a portion of her liver?
“I don’t have the words to express what she’s doing for my daughter,” JoLana said. “The two of them have a special bond. It’s neat to see them interact.”
“Nancy is living out her faith,” Josh added. “She is sacrificing part of herself so Annaka can have a chance at life. For Nancy to be willing to do this for us is unbelievable. It’s heroic.”
Like the song says, it’s what it means to be loved.