By Mindy Basara
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BALTIMORE (WBAL) — Traci Davies sensed there was something wrong with her son the moment he was born.
“They had to suction his lungs, and I just kept thinking, ‘This is my second baby, I don’t think this is normal.’ And they were like, ‘It’s OK, it’s all normal. You’ll be fine when he gets home.’ It wasn’t fine,” Davies said. “He was sick all the time.”
Ben Davies had 20 ear infections by the time he was 6 months old. As he grew, so did his list of ailments.
“Bronchitis, pneumonia, ear infections, sinus infections, gut infections,” Traci Davies said. “You name it, Ben had it.”
Ben Davies said the things he remembers most about his early childhood are trips to the doctor’s office, spending time in hospitals, and trying to figure out what was wrong.
Finally, when Ben Davies was 5 years old, an ear, nose and throat doctor had a suspicion. He ran a blood test, which confirmed that Ben has primary immunodeficiency.
Primary immunodeficiency is a rare, genetic disease. People with PI have an immune system that doesn’t work correctly. They get sick from infections easily and more severely.
The Davies were sent to an immunologist who began Ben Davies’ treatment that very day.
The monthly infusions at the hospital were hard, especially for someone who is terrified of needles. The treatment took most of the day and the side effects were rough.
“I wanted to be home. I wanted to feel better. I just wanted to be a normal kid,” Ben Davies said.
He would eventually get his wish.
When he was around 13 years old, doctors recommended he switch to a drug called Hizentra, a much faster subcutaneous treatment that could be done at home.
“I didn’t have to deal with going to the hospital every month. I got to be home. I was with my friends. I was with family. I just felt a lot more normal, and that was probably the biggest freedom for me was being able to feel like a normal kid again and be able to live my life,” Ben Davies said.
However, that’s not the end of the story. Traci Davies said in the back of her mind, she knew she had PI.
Traci Davies is now also taking Hizentra. The duo feels there is a moral to their story.
“Hope and not giving up, advocating for your children — number one,” Traci Davies said. “As a parent, educating yourself.”
“I hated talking to people about my disease and sharing my journey, but now I’m able to share it with people, and I hope I make an impact on people’s lives,” Ben Davies said. “That’s definitely what I try to do.”
Ben Davies has been on Hizentra for 15 years. He’s now a grown man who has graduated college, recently married and is feeling well.
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