Tina Caudle
Mommy to Taezia
Neurofibromatosis type 1 (NF1)
As a mom you know when something is wrong with your child. Taezia was born with a scary looking brown spot on the skin on her lower back. We asked her pediatrician about it at 8 months old. He sent us to Columbia and they did the genetic testing on her to confirm the diagnosis: Neurofibromatosis type 1 (NF1). But they didn’t explain anything. They told me she had a few small spots but nothing to worry about, just follow up in a couple years.
We followed up in 2 years with multiple doctors. It wasn’t until Taezia was 3 years old that we found the doctor that did all the appropriate scans to tell me the extent of the NF1. He immediately sent us to St. Louis Children’s Hospital within 2 days, and even paid for the trip.
As it has progressed over time, the main problem became that tumors are growing in her spinal cavity, restricting spinal fluid.
On Angels’ Wings started providing our family with pictures in 2015, when Taezia was 6 years old. They have continued to provide pictures along our journey. I’m also grateful for the personal connection and ongoing support they provide beyond just a photo session.
Taezia deals with a lot of pain and deformities of her bones. One major struggle is getting the tumors to stop growing. She’s had five major surgeries and two minor surgeries: two spinal rod and spinal fusion surgeries, three tumor debulkings, and two plastic surgeries. She is 13 now but will no longer grow because of the rods – they will not extend, stunting growth.
Another thing we constantly have to worry about is tumors turning to cancer. She’s had a couple scares, but so far all of them have been benign.
Taezia struggles with ADHD and a learning disorder. She also struggles with her image; she’s experienced bullying. It’s difficult to navigate life when I just want to protect her from all of this physical and emotional pain. The world can be so cruel. But I just make sure she knows she is loved and beautiful.
We’re in a good place with her medically right now. We just have to focus on tumor growth; there are no reconstructive surgeries on the horizon. I hope and pray for a miracle of healing. No more tumors, that they shrink and disappear.
