When Naomi DeBerry learned that her father needed a kidney, the six-year-old did not fully understand what it meant. She had become curious about her father’s at-home kidney dialysis treatments, so her parents decided to tell her the truth: that her father had kidney disease and needed a transplant to stay alive.
When her father, former Times-Picayune columnist Jarvis DeBerry, went in for the transplant shortly afterward, the doctor’s office offered Naomi a coloring book to comfort and occupy her. But she said it wasn’t enough.
“The hospital just gave me a coloring book and it didn’t really explain what was happening to my father,” said Naomi, now 11. “I needed support and I didn’t really have that. I had a lot of adults, but [there weren’t] any children who were going through the same thing.”
Naomi decided that after her own experience, she would write a book explaining to children what it is like to have a parent in need of a kidney. After working on it for about two years, she released “My Daddy Needs A Gift” in June, ahead of Father’s Day. She said she wanted other children to feel confident in the face of the anxieties that come from having a sick parent.
“I wanted to write this book because I was born into this crisis,” Naomi said.
‘It was a lot to go through’
Although the book focuses on kidney transplants, Naomi hopes it resonates with children who have loved ones with all kinds of different diseases and illnesses.
“I wanted to write this book for other children whose parents have had diseases, whether it’s kidney disease, liver, heart, or different cancers, [so] that they can feel confident because it was a lot to go through,” she said.
Naomi said that children who are more knowledgeable about organ donation can help their loved ones by advocating for them as well as informing others.
The educational and semi-biographical book features vibrant illustrations of a child and her family in a hospital as the child’s father undergoes a kidney transplant. With kid-friendly text by Naomi and illustrations by Jasmine T. Mills, the book explains the process of kidney transplants. There is also a glossary in the back of the book that includes definitions of transplant-related terms.
Jarvis and Kelly Harris-DeBerry, Naomi’s mother, helped Naomi see her vision of the book through. Kelly said that she and Naomi did not see many Black characters in books related to kidney transplants, and Naomi wanted to create that kind of representation.
Naomi said it was “bittersweet” writing the book, as she had to mentally return to the time of her father’s illness to write it. But at the same time, she had an opportunity to write about the situation for others.
The Covington-based Louisiana Organ Procurement Agency (LOPA) partnered with the DeBerry family on the book. LOPA offered background information for the book and donated funds so it could be published.
Cheryl McGee-Hills, a community educator at LOPA, said that it was important that children’s perspectives are heard when it comes to organ donation.
“Hearing something from a child is so important because they see things that we don’t see,” McGee-Hills said. “They say things that we never think of.”
More Black donors needed
McGee-Hills said that Louisiana has close to 2,000 people on its organ transplant waitlist, and of that number, more than 68 percent are people of color. She would like more Black people to become donors, as they are better matches for other Black people.
Naomi said that was the case for her father., who was waiting for a donor until a family member volunteered.
Aisha DeBerry, Jarvis’ cousin, donated the kidney that was transplanted into Jarvis’ body. She said she was excited to help her cousin, but grew nervous as the procedure approached. Support from medical professionals and religious faith kept her grounded, though.
It’s important that Black people sign up to donate organs“because there’s so many people right now that are suffering, needlessly, for no reason at all,” Aisha told Verite News.
McGee-Hills said organ donors are urgently needed. She said there are thousands of people who are on dialysis who have not made it to the waitlist.
About 50 percent of people on organ waitlists will get a new organ within five years, according to United Network for Organ Sharing. A shortage of suitable organs is the main reason why not everyone on the list receives a transplant.
Kelly, Naomi’s mother, recognizes that asking people to become organ donors is a huge ask, but “looking at it through the eyes of a child can soften the entry point into a difficult conversation,” she said.
Naomi will give a book talk and signing event on Saturday (Aug. 10) at the Community Book Center in New Orleans, timed to coincide with National Minority Donor Awareness Month. There will also be information available for people seeking resources about organ donors.