Jaiya is an 11th grader in North Carolina. She was diagnosed at the age of 2 with Chronic Severe Neutropenia-Autoimmune. Jaiya’s body responds poorly to Neupogen and as a result has not been able to remain on it as a form of treatment. Her Neutropenia has caused her and her family to spend countless nights in the emergency department resulting in extended stays at the hospital. She is blessed with an extremely supportive family and community who are giving Jaiya a strong foundation to define Neutropenia on her own terms. She has found her voice in raising awareness and being an advocate for the Neutropenia community through raising awareness about Rare Disease Day, multiple social media campaigns, painting events, and the formation of her own Foundation. This past year Jaiya became involved in a local nonprofit that serves single mothers. Read below to see how Jaiya has made an impact on single mothers whose children have chronic illnesses.
“ I have partnered with Level Up Parenting to serve single mothers. Level Up Parenting is a local nonprofit that serves single mothers in a lot of different ways. I got with the president and her board to find single mothers with children with chronic illnesses. My parents work hard to get me the care I need, and they do it together. So, I figured it is extra hard on single moms. I spent 6 weeks in June and July 2023 surveying the single mothers that already work with the nonprofit. I had a QR code that I used as asign-upsheet and questioner at most of theorganization’sevents in June and July. I was able to work with 5 mothers that have children with chronic illness. My team created packages for the mothers that included mental health resources, thermometers, children’s Tylenol and ibuprofen as well as information from the health department. I partnered with Level Up Parenting to host an event on September 16th for the 5 moms I worked with and the other moms. It was a health fair where the children were able to come and get free dental services and 7thand 12thgrade immunizations required by our state. We fed the families and allowed the moms to receive free massages.”
Congratulations Jaiya!! You continue to make a difference in your community!! Jaiya has served as a Junior Ambassador since the program began and will continue to do so for the 2023-2024 term. Job well done, Jaiya!
