Tatum was born a healthy baby girl on October 20, 2005 at 2:00 in the morning. She took to breastfeeding right away, which was exciting for us because our first daughter, Tanner did not. At two weeks, we noticed that she was only holding her head a certain way and the pediatrician speculated that she had Torticollis (a tightening of the muscle of her neck). Sure enough at 2 months old, Tatum began physical therapy at Children’s Hospital to work on loosening up her neck so she could hold her neck correctly. Other than that, Tim and I felt that she was developing just great. She was eating correctly and she was very happy. However, at 7 months old, when her neck still was not correcting itself, our physical therapist recommended us to see a neurologist because she was concerned about the fact that after 5 months of therapy she didn’t seem to be getting better. The neurologist told us she had Hypotonia (really floppy muscles). This just meant more physical therapy and occupational therapy as well. We had Botox injected in her neck to correct the Torticollis and that was a success, however, we started to become concerned about her development when she didn’t crawl until 15 months, didn’t walk until she was 22 months, and had only uttered a few select words. That was when we were referred to genetics at Children’s to have her tested. At first, they only tested for Fragile X, Prader Willis, and Angelman Syndrome. Those all came back negative. So, we began to feel she had Autism. At the JFK Center on Autism, they felt that she could be Autistic, but could possibly have Rett Syndrome. They encouraged us to return to genetics to have her tested for Rett. That was the first time we had ever heard of Rett. When we researched it on the web, it described Tatum to a “T”. So, we knew in our hearts even before she was officially diagnosed on July 8, 2008 that Tatum had Rett Syndrome.
Today, every aspect of Tatum’s everyday living skills are affected by Rett Syndrome. Although she can walk, she now has to wear a helmet due to multiple concussions from falling. She began having seizures when she was 4 years old and we recently found out she is seizing at night. She was having breathing difficulties while sleeping as well, but after a successful tonsillectomy, her breathing seems to be controlled. Tatum wasn’t gaining weight, so at age 4.5, she received a g-tube for supplemental feedings. Tatum was able to feed herself but has continually lost the control of her hands due to the symptomatic hand wringing Rett Syndrome causes. She requires 24/7 care for eating, bathing, dressing, etc.
Although Tatum struggles with all the symptoms of Rett Syndrome, she remains one of the most happy and beautiful people I have ever met. She is happy most of the time and always has a smile on her face. She loves being around others and thrives on attention from her peers. Tatum has touched many people in her life and continues to make a difference in her family’s life every day. She is our angel here on Earth!!