According to a story from The Monitor, Nubia Garza’s ten year old daughter Edie was diagnosed with the rare condition Williams syndrome when she was just four months old. The family are residents of Rio Grande City. A disorder that presents with a number of physical and mental challenges, keeping Edie happy and healthy has not always been easy. Regardless, Nubia is always amazed by her daughter’s fearlessness in the face all of the difficulties.
About Williams Syndrome
Williams syndrome is a genetic disorder which can have a number of physical and mental impacts. It is most characterized by distinctive facial features and intellectual disability. The syndrome is linked to the microdeletion of some genetic material found on chromosome 7; only one chromosome of the pair is affected. Genes affected include LIMK1, CLIP2, ELN, GTF2IRD1, and GTF2I. Symptoms of the syndrome include heart defects, distinctive facial features, developmental delays, anxiety, phobias, low muscle tone, and failure to thrive. People with Williams syndrome are known for their friendly and sociable personality. They have an exceptional ability to empathize with others and have little fear of strangers. There is no cure for Williams syndrome; treatment focuses on addressing health concerns like heart defects; physical and behavioral therapy can also be beneficial. Patients often respond strongly to music which can help with anxiety. To learn more about Williams syndrome, click here.
Edie’s Story
Edie’s Williams syndrome has caused her to need surgical operations several times. So far she has gone under the knife eight times in her short life. Two of these operations were highly precise open heart surgeries. Despite all of this, Edie has continued to display a positive attitude and show her resilience. Nubia says that her daughter is more likely to complain about having to do chores or solve math problems at school than she about her Williams syndrome.
Edie was fortunate to get an earlier diagnosis. Most Williams syndrome patients are four years old on average when they get diagnosed. She had significant delays in her physical and mental development, but she began speech, occupational, and physical therapy as soon as it was possible for her to do so.
Despite it all, Nubia says that her daughter isn’t so different from other kids. She likes listening to Katy Perry and his fascinated with medical dramas such as The Good Doctor. Edie also loves butterflies.
