“We’ve actually never been able to get her seizures under control,” Monica said.
Chelsea also experienced issues with her respiratory system, so she had a pulmonologist on her care team as well, among others.
Coping with the loss of what Chelsea’s life could have been
For the first few weeks after Chelsea’s diagnosis, Monica was, in her own words, “a mess.” She ruminated over all the things Chelsea would miss out on in life because of her diagnosis, such as being independent, getting married, going to college, and every other milestone parents hope to watch their children get to experience.
She also contended with the fear of knowing that Chelsea was going to have a tough road ahead, both physically and mentally, because of her condition. Today, Chelsea is in a wheelchair, can’t use her hands, eats through a feeding tube, continues to have seizures, and experiences other problems that affect her gastrointestinal system, her feet, and her mind.
“She’s unable to have any purposeful movement. She cannot roll over, and then she cannot pull the covers up if she’s cold or, you know, kick them off if she’s hot,” Monica said. “She’s really trapped in her own body.
Because of how debilitating Rett syndrome is, Monica has dedicated her life to ensuring that her daughter is as comfortable and well taken care of as possible, even with a chronic disease.