Riding around his house on a large toy bike, Daniel Trowell could easily be mistaken for a preschooler. He smiles easily from ear to ear and laughs heartily. However, he talks like a child much older than he looks.
His mother, Lisa Trowell, ends the mystery.
Daniel is 10 years old, his growth stunted by years of sickness.
He was born premature at 2 pounds and 2 ounces and with cerebral palsy. At age 4 he was diagnosed with leukemia and while undergoing chemotherapy his kidneys shut down because of an infection.
Daniel was flown immediately from Memorial Health University Medical Center in Savannah to Eggleston Children’s Hospital in Atlanta. In addition, to his failing kidneys the infection sent him into a coma where he remained for more than 40 days. He had a 20 percent survival chance.
Once in Atlanta he developed meningitis and candidaias, a type of yeast infection affecting the whole body.
“He had several issues going all at one time,” Lisa said.
For six years, the leukemia has remained in remission. Nonetheless, his kidneys continue to be an issue.
He has been undergoing dialysis for six years. For about three and half of those years he went to the hospital three days a week to undergo hemodialysis for three to four hours at a time. Hemodialysis is done through the blood. For the past two and half years, he has been doing peritoneal dialysis at home, which involves a tube that goes through his abdomen.
“He gets hooked up to a machine every night for 12 hours,” Lisa explained. “This option, we like best.”
Yet, Daniel still must be taken to the Medical College of Georgia in Augusta each month for a check-up.
For about two years the Trowells have been trying to get a doctor to do a kidney transplant, seeing long-term dialysis is not the best solution. They have been rejected three times because Daniel has several arterial blockages.
Last year they finally got the response they had been searching for when a doctor at Emory University in Atlanta agreed to take the risk and perform the transplant. The surgery will be done at Eggleston Children’s Hospital in Atlanta.
The family is now trying to secure a kidney donor.
“This is our first outreach,” said Gregg Trowell, Daniel’s dad.
The Trowells said they haven’t asked family and friends because they did not want to seem like they were pinning them in a corner. Both would rather put the information out there and let anyone interested make the decision on their own.
Obviously, the Trowells would donate a kidney themselves, but Lisa has had kidney stones and Gregg lost about 18 pounds to be able to donate his kidney. But his blood sugar elevated after the weight loss.
They acknowledge they are asking a tremendous amount. Neither can exactly pinpoint why someone should donate their organ. Yet, when asked if they would consider donating a kidney to a child they didn’t know, Gregg immediately replied “yes.”
“It’s a lot to ask, I reckon,” he said.
A potential donor would have to undergo extensive testing and evaluations to make sure they are a good match for Daniel prior to the transplant. They can expect to be out of work for six to eight weeks. They also will have to make about three trips to Atlanta in total.
However, all of the medical expenses would be covered by Daniel’s Medicare insurance, and the donor has the freedom to schedule the surgery whenever it is convenient for them.
While getting a kidney won’t make all his medical problems disappear, it will give him a chance at a more normal life.
Daniel is unable to attend school because of a catheter attached to his abdomen. His parents fear one of the kids could accidentally pull it out.
“We kind of shelter him,” his father admitted.
Two days a week he is home-schooled by a retired librarian. He attends physical therapy one day a week, and the other two days he hangs out at home.
With a new kidney he could attend school and enjoy the smaller things kids take for granted, such as being able to swim and take a bath instead of a sponge bath.
Through it all he has remained a trooper, according to his parents.
He told this reporter all about his deluxe treehouse in the sky.
“You can look at it on your way out,” he said.
The air-conditioned and satellite-equipped getaway is decorated in “Cars” memorabilia from the television to the furniture.
Sitting in his chair with one of two remotes in his hand Daniel looks like the king of his castle instead of a little boy who is sick and in need of a kidney.
Yet, even if others decide not to be a donor, the Trowells hope that by sharing their son’s story they will at least increase awareness of kidney donation. According to Lisa, if people understood the process and the need, more would donate.
“Until we got a sick child, we didn’t know anything,” she noted.
The National Kidney Foundation reports that one in nine adults in the United States (or 20 million people) have chronic kidney disease. Another 20 million individuals are at risk of developing it.
“It’s such a needy thing,” observed Lisa Trowell.
Anyone interested in learning more about donating a kidney to Daniel should contact Erica at Emory Children’s Hospital at (404) 712-7984.
The coordinator for Daniel’s kidney transplant is Shannon at Eggleston Children’s Hospital. She can be reached at 1-800-605-6175 ext. 6182.