Seven-year-old Astraea is a bright and bubbly girl who loves swimming and feeling the sun on her face. Born with a rare genetic mutation of the STXBP1 gene, Astraea is nonverbal and uses a wheelchair. Her mother, Harlei, cares for her full-time, while her father works outside the home to support their family of five.
For Astraea and her family, life was about making the most of everyday. But one ordinary day, their life changed. Usually full of smiles, Astraea bursts out in tears and sobs, behavior that was completely out of character. Harlei, her biggest advocate, knew that something was wrong. After numerous ER and doctor visits, a neurologist found a large central nervous system (CNS) embryonal tumor in Astraea’s brain. Almost immediately, she underwent extensive surgery to remove a large portion of the tumor from her brain.
Following surgery, Astraea began six weeks of daily radiation treatments followed by chemotherapy. The family traveled an hour each way, every day, for treatment. The cost of travel and treatment quickly became overwhelming. At the same time, the family had recently moved into a handicapped-accessible home that could accommodate their family’s needs while allowing them to remain in their school district. Harlei was taking care of her daughter full-time for her daily treatments, while her husband had to take a lot of time off work to care for their other children. With a mortgage, rising utility bills, and everyday household expenses, financial pressures mounted quickly for the family.
Throughout their journey, a hospital social worker became a source of hope and support. She connected the family with resources that had such a positive impact on Harlei that she was inspired to possibly pursue social work herself someday.
In December 2025, the family received assistance through JAF’s Food Security Program to help ensure they had access to nutritious meals during treatment.
“It was amazing because we could really stock up on frozen meals and things that were easy and quick to whip up,” Harlei shared. “It took a huge load off our shoulders.”
The assistance allowed the family to focus less on grocery costs and more on caring for Astraea during treatment.
“Out of all the organizations that we’ve dealt with, JAF does a lot more than others I’ve seen,” Harlei said.
Today, Astraea continues to undergo routine scans every three months, and thankfully, there has been no evidence of tumor growth. While the journey has not been easy, Astraea’s resilience, along with the love and dedication of her family, continues to inspire everyone around her.
