Life changed in an instant for Ashleigh when she was awakened by her 5-year-old daughter Destinee holding her head and crying out, ”It hurts, it hurts.”
Knowing a trip to the hospital was in order, Ashleigh helped Destinee put on her shoes. But when the little girl tried to stand, her legs collapsed beneath her like rubber bands. CT scans and an MRI revealed the worst: Destinee had a rare type of brain tumor called Atypical Teratoid/Rhabdoid Tumor or ATRT. The doctor told Ashleigh that there have been only 60 people in the world with this tumor type and, of those, only 14 are still alive.
With time being of the essence, emergency surgery was scheduled. Eight hours later, Destinee came out of surgery with the tumor removed. But Destinee’s and Ashleigh’s challenges were just beginning. Destinee received radiation every day for six weeks, followed by four stem cell transplants. Once a month, she received a week of chemotherapy.
Like many children diagnosed with a brain tumor, before her diagnosis, Destinee was a happy and healthy 5-year-old—rarely even having a cold.
The new reality of raising a child with a brain tumor left Ashleigh frightened and confused. Seeking answers, a social worker suggested she turn to the American Brain Tumor Association, where she found a wealth of information on our website that helped her better understand her daughter’s diagnosis and treatment regimen. Inspired, she posted Destinee’s story at the site to be shared with other parents of children diagnosed with a brain tumor.
It has been two years since Destinee’s last treatment. A full resection of her tumor and four high dose rounds of chemo and radiation left her with thinning hair, in need of bi-lateral hearing aids, suffering from hypothyroidism and experiencing stunted growth. Yet Destinee, ever the survivor, is proud of her small stature, since it’s a sure sign of how she is beating the odds against a rare and deadly tumor.
Destinee and Ashleigh are strong, and they inspire the ABTA’s commitment to families seeking answers when they most desperately need them.
Forty years ago, our founders—two mothers who were coming to terms with their own daughters’ brain tumor diagnoses—formed what would become the American Brain Tumor Association. Their love and loss inspired a national movement in brain tumor research funding and patient and family education and support.
Today, the ABTA is a recognized leader in the brain tumor community and advocate on behalf of the more than 700,000 people in the United States who are living with a brain tumor.
Support our efforts that are improving, extending and saving lives—make your generous contribution today.