All tests in the NICU came back typical, and we believed the only challenges she would face would be due to the differences in her mouth, hands, and feet. So, we took our sweet baby home after a month in the NICU. She was the sweetest baby, and we adapted everything to make life easier for her. She had weekly therapy to learn how to use her hands, eat, and stand. She was so strong, happy, and healthy. She would speak, play with toys, loved to cuddle, laugh, and spend time with her family. You could see her sweet and sassy personality early on. She was developing and relatively healthy until her immune deficiency, and Rett Syndrome entirely presented itself. She lost the skills she had developed. They were replaced with seizures, breathing issues, infections, medical treatments, and surgeries. Each year brought a new diagnosis.
Courtesy of Natalie Weaver
Courtesy of Natalie Weaver
‘All done,’ she mustered out, with an approving ‘finally mom’ look. It was the hardest decision.’: Mom of 10-year-old bullied for facial deformities vows to fight back after her death, ‘Sophia was like no one in this world’
