It’s a Girl Thing!
Turner Syndrome (TS) results in one out of 2,000 to 4,000 live female births. Many do not result in live births. TS is a rare genetic disease that does not have a maternal or paternal component. The condition is uniquely different to each girl/woman depending on the distinctive genetic makeup. TS girls are referred to as “Butterflies” because of the X chromosome that looks like a butterfly and rare phenomenon.
TS comes with complex disease processes that requires a significant interdisciplinary team of specialists. These teams only exist in very few clinics in other states where they often travel to receive care and treatment. Care for these girls is fragmented and lacks education, even with some pediatricians and other specialists. The ultimate goal is to provide such a clinic in the South Florida area armed with commitments from volunteer specialty physicians, nurses, child life advocates, and more in one place three to four times per year.
This goal is currently on hold while Soaring Butterflies for Turner Syndrome in South Florida has committed to helping families in South Florida and abroad as the closest charity organization. Families are being supported by the charity to access care, medication, treatments, and the girls’ other needs due to COVID-19 and loss of family income and health insurance coverage. These girls are vulnerable to COVID-19, and many have had to stop treatments and physician visits.
Resilience and Tenacity
I created the artwork displayed in the photo for the Soaring Butterflies’ first charity walk. It was designed to not only draw attention to the pictures but to educate and inspire. The quotes displayed on the artwork are some of the girls’ favorite quotes. These girls are resilient and full of tenacity through treatments, surgeries, and life challenges in general. “Butterflies” can become nurses, doctors, architects, web designers, and anything they can dream of with access to comprehensive care and support.
Soaring Butterflies for Turner Syndrome, Inc.
If you would like to donate to the Soaring Butterflies for Turner Syndrome, Inc., please use the QR code to connect to the charity’s website and the PayPal at the bottom of their homepage.
Thank you for your support.
Liliana Poe, MSN, RN
Upsilon Chi Counselor