At five years old, Natalie has proven to be a brave little warrior time and time again. At just two weeks old she was diagnosed with sickle cell anemia – hemoglobin SS (HbSS), the most severe type of sickle cell. Natalie’s first blood transfusion was July 2014, a few months shy of her first birthday. To date, she’s had nearly 40 transfusions with a dozen hospitalizations (including a surgery to have her spleen removed).
“Being a mother to a child with sickle cell anemia is the most difficult job in the world,” said Jessica. “There are many sleepless nights from pain and fever and trying to manage symptoms at home to avoid another hospitalization. The worst feeling in the world for any mother is the feeling of helplessness experienced when you cannot help your child.”
Jessica first heard about ABLE United through her past work experience as a waiver support coordinator with the Agency for Persons with Disability.
“I loved the idea of being able to save money for Natalie’s future and not lose our benefits,” she explained.
“Our ABLE United account allows us to have a “rainy day” fund because when Natalie gets sick and is hospitalized as she was this past week, I miss out on work. But, thanks to her ABLE United account, we are still able to ensure that the bills are paid.”
In her spare time, Jessica works to advocate on behalf of her daughter by speaking to other parents who have children with different variations of sickle cell, as well as turning to social media to help raise awareness for the need of advanced research.
Earlier this year, Jessica also became an ABLE United brand ambassador to share with other parents and caregivers the benefits of an account.
“My hope for Natalie’s future is that she is able to save with ABLE United and be able to go to college and pursue whatever career she wants,” she said. “Her current dream is to be a pediatrician when she grows up!”