Alyssa is a 17 yr. old kind, loving girl. She has a brother Jake (22) and a sister Emma (19). Alyssa and her family lives in Holly Springs, North Carolina. She loves sports especially football and the Seattle Seahawks.
I knew at the age of 3 months that something was wrong with Alyssa. She was not growing like her siblings. Alyssa had a seizure at 3 months. She did not walk until she was 3-4 years old and did not speak until she was 5 years old. Doctors diagnosed her with a possible stroke and CP. In addition, Alyssa was diagnosed with strabismus, microcephaly, spasticity, scoliosis and kyphosis. She also has other medical issues like a blood clotting disorder and systematic hypoglycemia. She has had PT, OT, desensitized therapy and speech therapy since the age of 14 months.Alyssa is considered legally blind. She also has CVI, which is cortical visual impairment and has had four surgeries on her eyes.
With all of her difficulties, Alyssa never let it stop her from doing anything she wanted to do. She has worked hard her whole life. She runs and plays sports, and she never let anything or anyone get in her way.
Finally, in February 2017 Alyssa was diagnosed with CTNNB1 syndrome with the help of her neurologist at Duke University. Her peers in school have not always accepted Alyssa, and at times, she has been severely bullied. She now does presentations at schools on her syndrome to educate others and to bring awareness and acceptance of kids with disabilities. Due to COVID she has not been doing her presentation at schools but has done a virtual presentation. She will continue to spread awareness through her words and through volunteering.
Alyssa is an amazing role model! We are beyond proud of our strong determined girl!!
Comments