Osmond boy awaiting multi-organ transplant

July 22, 2017 GMT

OSMOND — Every aspect of life in Danny Anderson’s family is up in the air right now.

The soon-to-be fifth-grader at Osmond Public School is on the transplant list at the University of Nebraska Medical Center in Omaha — for the second time — awaiting the availability of four organs that will match his body.

At any moment, his mom Mary’s phone could ring with the call delivering news that could change everything — hopefully for the better.

“There are so many things we say we’re going to do after Danny’s transplant. We just want to get back to a normal life because life on the list is ...” Mary paused to search for the right word.

But 11-year-old Danny didn’t miss a beat, “... stressful.”

Danny’s initial diagnosis of chronic intenstinal pseudo obstruction led doctors to perform an ileostomy — a surgery in which a piece of the intestine is diverted to an artificial opening in the abdominal wall — when he was only 5 years old. He suffered a prolapse in early 2012, which led to his first transplant in November of that year.

Recovery from the transplant, however, did not go as smoothly as he or his mom had anticipated.

“He pretty much had every complication,” Mary said.

Among them was Steven Johnsons Syndrome, a serious skin disorder that generally starts as the result of a reaction to medication or infection. He also developed post-transplant lymphoproliferative disorder, a type of cancer that resulted from the transplant.

Eventually, Danny went into full rejection. Doctors removed his transplanted bowel in late 2013, and he was finally released from the hospital in April 2014.

In all, Danny spent almost 17 months at the University of Nebraska Medical Center before coming back home to Osmond, where he has three brothers: Christopher, 19, Connor, 13, and Dillon, 9.

Danny has been on the list for another transplant since September of 2015. His mom works at a convenience store because a career in her field of study — business and logistics — won’t allow the flexibility she needs to care for him, she said.

The struggle hasn’t been without blessings.

While in the hospital, Danny met Emily, another young transplant patient with whom he became close friends and to whom he got married in a make-believe ceremony officiated by a clown at the hospital last summer. He carries with him a small photo album of the event.

“She still wears her ring, but Danny’s fingers are too small for his. It just falls off,” Mary said with a smile.

At home, Danny is active. He enjoys playing video games, loves “The Flash” on TV and “fighting” with his brothers.

“They’re all boys; they’ll fight over air, I think,” Mary said with a laugh.

But Danny’s need for the new liver, pancreas, small bowel and colon is becoming greater each day. He recently was hospitalized with pancreatitis, an infection Mary said he is likely to develop again because his body is wearing down.

He’s been on total parenteral nutrition (TPN or IV nutrition) since he began getting sick.

“It basically destroys your liver, so he’s got liver damage,” Mary said of the TPN. “There’s nothing they can do other than pain control.”

Mary is optimistic about Danny’s next transplant, whenever it may occur, because he’s not currently fighting the infections that used to arise from the pseudo obstruction. But they’re going into the transplant process a little wiser than the first time.

“They go over all of the complications and everything beforehand, but for the first one, all we heard was, ‘We can help your son get better,’ ” she said. “You’re like a teenager; you don’t think it’s going to happen to you. Now I know there’s going to be complications. I just hope they’re small ones.”

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Want to help?

Find out how to donate to Danny’s medical expenses by visiting Danny’s Children’s Organ Transplant Association page: https://cota.donorpages.com/PatientOnlineDonation/COTAforDannyA/