I would love to see her family’s nonprofit fight for a newborn screening of newborn girls because 1 in 2,000 of them have Turner Syndrome. CHD is often a complication, so early diagnosis is urgently needed. The average age of diagnosis is 12 years old. Girls and women with TS are at high risk of aortic dissection as well.
If RaeRae of Light would like to change this for earlier diagnosis of TS and CHD I would be interested in working with them to advocate for Turner Syndrome to be added to our state’s newborn screening program.
My daughter, Kelly, started a TS volunteer group here in Arizona. The last three years she has been recovering from autoimmune encephalitis and is still not well just yet.
Before getting sick she was an ASU Summa cum laude graduate of their College of Nursing and Health Innovation. She was applying for her Masters in Genetic Counseling when she got sick.
She had advocated for ASU to have a genetic counseling program. During one of her hospitalizations we learned that her efforts paid off. She received an email stating that ASU was moving forward with her suggestion. While Kelly may not benefit from it, Arizona’s families will.
To put a name with a face, you can find Kelly’s page under resources, Arizona at www.TurnerSyndrome.org. I am filling in for her volunteer support until she is well again someday. Until then it is my great honor and privilege to care for her and continue to advocate for the things she wanted to accomplish.
Once again, thank you for the wonderful article on Baby Raegan and her brave family.
Kind Regards!
Editor's note: Lisa Jasper wrote this piece for Kelly Shea Jasper.
