Living with Hemophilia: Nothing Can Slow Kenny Pendergast, Jr. Down Now

Kenneth David Pendergast Jr. plays soccer, flag football, basketball and runs track. He’s a ball of energy with a big personality. When he was an infant, he was diagnosed with severe hemophilia A, but not even a hemophilia diagnosis can slow Kenny down.

Kenny’s parents, Viki and Kenneth, encourage Kenny to be the outgoing, active and friendly kid he is, while, of course, staying on top of his healthcare regimen. The Pendergast family will mark World Hemophilia Day on April 17, 2024, with gratitude for the wonderful care they have received at Children’s Hospital New Orleans. While hemophilia is usually an inherited blood disorder in which the blood doesn't clot properly, Viki explained that they have no history with the disease as Kenny was adopted when he was only a couple of weeks old. They quickly learned that hemophilia is a dangerous condition – especially for an active young boy – because it can lead to spontaneous bleeding as well as bleeding following injuries or surgery.

Viki and Kenneth had been trying to adopt a baby for three years. They had a daughter, 14-year-old Piper, but they were hoping for another little one. They had a few failed adoptions and had almost given up when they got the call that changed everything. “The adoption counselor said, ‘Would tomorrow be a good day to pick up your son?’ We couldn’t stop crying. Our dreams were finally coming true,” Viki recalled.

The Pendergasts brought their newborn son home on July 8. The first six months of Kenny’s life were everything the parents hoped for; he was smiling, meeting milestones, and loved being able to zoom around in his walker. When Viki and Kenneth went back to work full-time, Kenny spent lots of time with his aunt, “Coco,” who along with Viki, noticed some odd bruising on Kenny’s body when he was about six months old. Their local pediatrician suggested it was from his aggressive use of the walker, but Viki and Coco couldn’t shake the feeling that something was wrong.

Viki made the decision to take Kenny to Children’s Hospital New Orleans right away. Unfortunately, blood tests unveiled the severe hemophilia A diagnosis, meaning Kenny’s blood has severe difficulty clotting. Other parents might have broken down at the news, but Viki and Kenneth began to make a plan with Kenny’s care team, including his physician, Maria Velez, MD, pediatric hematologist, and Medical Director at the Hemophilia Treatment Center, Hemophilia, Bleeding Disorders and Thrombophilia Program at Children’s Hospital New Orleans.

They knew they would do everything for their son and felt there was no better place to receive care than Children’s Hospital New Orleans.

“I am so happy we were able to take Kenny to Children’s,” said Viki, “They made us feel so comfortable; we never thought about taking Kenny anywhere else. Everything is geared toward the child’s comfort. It’s easy to understand why the doctors and nurses have chosen this work. You can tell they want to be around kids. It’s not just their job, it’s their passion.”

At first, Kenny hated even driving by the hospital, but once they met Dr. Velez and her nurse, Claudette, Kenny was able to calm down. Viki recalled how quickly Kenny warmed up to his doctor, “Kenny loved Dr. Velez from his very first visit. She always wore beautiful chunky jewelry, and he loved playing with it. He always said he was going to marry Dr. Velez someday, and he thinks Claudette is ‘awesome.’” Kenny only had amazing things to say about Dr. Velez. “Dr. Velez is nice and funny, and she likes Halloween and I love Halloween, too,” Kenny said, “I love dressing up and decorating the house with my dad.”

Dr. Velez suggested that a port be inserted so Kenny didn’t have to be constantly stuck when getting his infusions. “Once he got the port inserted and realized going to the hospital didn’t mean being in pain, he was fine. And Dr. Velez was nurturing and talked to him about other things,” Viki said. “She makes him feel like he is more than just a patient. She makes him feel like a regular kid. And Claudette is always asking him if he is being good and doing well in school. She is wonderful.”

Over the past 10 years, Dr. Velez has been with Kenny each step of the way through his diagnosis– changing his medications as needed. Most recently in December 2023, Kenny was able to have his port removed and Viki gives him an injection of Hemlibra every other week.

“Kenny knows hemophilia is a lifelong disease,” Viki said. “But the medical advancements since he was a baby have been amazing. There have been upgraded medications coming onto the market and soon he will learn to care for his disease more on his own.”

This summer, Kenny will be going to a camp sponsored by the Louisiana Hemophilia Foundation (LHF), where he will get to run and play with other kids managing the disease and, mom said, will learn how to give himself the biweekly injection. “He will also learn how to give himself an emergency infusion if he has a bleed so he can be self-sufficient, when necessary,” Viki said.

“After talking with plenty of moms with kids with hemophilia, I think these kids are born with a ‘daredevil gene,’” Viki said laughing. “They are all so active, and it’s hard to slow them down. When he was little, we had rubber everywhere in the house and so did my sister. But now Kenny understands his disease, he knows his body, and I don’t limit him. I want him to be a typical kid. For the most part, he can be careful when he plays. I want him to be able to run around and be with the other kids.”

When the leaders of the LHF met Kenny, they knew they had a child who could represent the organization. Recently, Kenny spoke to Louisiana senators and representatives in support of legislation that would require insurance companies to pay for much needed medications for hemophilia patients that aren’t typically covered.

Mom brags that Kenny is super smart and does very well in school. In addition to all his sports, he “loves, loves, loves” his Xbox and Switch, and always finds time for Roblox and Fortnite.

“It’s all going by so fast. Kenny’s future is going to be amazing,” Viki said. “I want him to be like everyone else. I want him to grow up, find something he loves to do for a living and keeps being an awesome human being.”

Learn more about the Hemophilia Treatment Center (HTC) at the Hemophilia, Bleeding and Thrombosis Program and hematology healthcare program here: https://www.chnola.org/services/hematology-oncology/hematology-services/