News 5 Investigates Medical Mystery Impacting Children Along the Gulf Coast

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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.

Symptoms of DIPG include problems with the eyes, trouble balancing and walking, nausea and vomiting, and difficulty chewing and swallowing.
With the number of reported cases along the gulf coast, many people wonder if the area is considered a cancer cluster. According to the state department of health in Mississippi, there are no known environmental causes in the area for disease. The area cannot be named a cancer cluster due to the lack of data. For information about the guidelines for declaring an area a cancer cluster click here
News 5 checked with the Mobile County health department and is told they are looking into it.
Kristina Atkinson’s daughter Dasia was diagnosed with DIPG in 2005. The Atkinson’s were living in Mobile at the time. Kristina Atkinson says her daughter’s diagnosis sent her in a panic, “”I felt like I fell asleep watching a horror movie and that someone was going to come along and wake me up.”
Dasia Atkinson is one of the rare children who survived DIPG. She is now 19 years old and wants to go to school to be a neonatal nurse. Dasia Atkinson is hopeful for what the future holds, “When I look back on it, and think about what I’ve been through… it’s amazing that I’ve come this far, and I hope to see years on.”
Still little is known about DIPG, and there is not much funding for research.
Despite that, people in Mobile and the surrounding areas are coming together to raise money and awareness. The community has rallied behind the family of Aubreigh Nicholas. The 10-year-old girl from Semmes is currently battling the disease.  The group ‘Aubreigh’s Army ‘ has helped put on dozens of fundraisers. High schools have made her an honorary captain and homecoming queen at football games. She even got to meet Alabama head football coach Nick Saban.
Back in Saraland, Brooke and Toni Allo say it’s the love from the community that has helped them get through this tough time.
“If it wouldn’t have been for those people it would’ve gotten to a point where there was nothing else we could do,” says Toni Allo.
There is still no cure or a known cause of the disease. Click on the link below for more information about DIPG.
Click on the link below if you would like to donate to help find a cure for the disease.

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