MOBILE, Ala (WKRG) — News 5 investigates a rare and deadly form of brain cancer impacting some children along the Gulf Coast. The cancer is called Diffuse Intrinsic Pontine Glioma or DIPG. The brain tumor is located in a part of the brain that cannot be surgically removed, according to doctors who treat the disease.
Dr. Amar Gajjar at Saint Jude Hospital says 200 children are diagnosed with the cancer per year in the United States. At least five children have been diagnosed with DIPG along the Gulf Coast within the last 8 years. Four of those children have died. Three are from the Ocean Springs, Mississippi area, and two from Mobile County.
News 5 spoke with two mothers whose daughters were diagnosed with the disease. Brooke and Toni Allo’s daughter Kaylee was diagnosed on March 24, 2016. Kaylee was 7 years old at the time. Brooke Allo tells News 5 about the moments doctors told her that Kaylee was diagnosed with DIPG. “I literally had to look at him and ask him, I said is she going to die… and he just shook his head and said I’m so sorry.”
Kaylee Allo died in September this year, 18 months after her diagnosis.
According to Saint Jude Hospital, most children diagnosed with the disease do not survive. Doctors say children who are diagnosed usually have 6 months to a year to live. About 10% to 20% of all childhood brain tumors are DIPG. The disease is more common in children between 5 and 10 years old, but a child at any age can be diagnosed.