It has been a team effort to ensure a 12-year-old Colombian girl has the best chance to fight back against a rare immune disorder system, with infectious disease specialists like Dr. Cesar Arias, professor of infectious disease in the Department of Internal Medicine at McGovern Medical School, extending large helping hands.
Doctors diagnosed the girl with Corynespora Cassiicola disease, an invasive disorder that leaves her susceptible to infections and numerous complications as her body is attacked by funguses and different types of bacteria. Her vision and her speech have been affected and, despite the efforts of medical teams in the area of Colombia she hails from, medical professionals reached out across the world for assistance.
One of those who wanted to assist was Arias, a fellow Colombian, who took an interest after hearing about the girl’s challenges in September last year from a colleague at the Children’s Hospital of Philadelphia. After fighting the disease since she was just 4 years old, Arias said her outlook had taken a bad turn – the invasive fungi had weaved its way through her face and showed no signs of stopping.
“She was in a very dire situation because the fungus had already invaded her brain,” Arias said. “In just another few weeks, should would die.”
A hospital in Colombia did have expertise in such infectious diseases, and Arias said Daniela did respond somewhat to normal anti-fungal medication. However, that success was short-lived, and researchers and doctors with greater expertise needed.
Arias said Dr. Steve Holland, a distinguished investigator at the National Institutes of Health (NIH) in Bethesda, MD, and Dr. Mihalis Lionakis, chief of the Fungal Pathogenesis Section at NIH, were interested in helping Daniela and also gain a better understanding about the rare condition. Researchers at NIH had treated similar patients, and the opportunity to save the girl’s life while also gaining more ways to fight the disease led to a concerted effort by many to have Daniela flown to medical facility capable of giving her a fighting chance.
Arias worked closely with his connections in Colombia, including the charity organization at the hospital, to have Daniela transported to the NIH. He offered to pay for a plane ticket for Daniela and her father, and was closely involved with obtaining a visa from an embassy. He credits a social worker at the hospital for leading the charge with paperwork, helping with technical details like passports, and the charity organization subsequently helped cover costs for the father’s stay overseas.
Healing the Child Northeast, Inc. was also pleased with the intervention and help from doctors like Arias. The volunteer organization works to provide medical care to children in need, with 17 chapters in 22 states across the U.S. to provide services worldwide. The effort to help Daniela was the first time Arias worked with the group.
“I remember thinking ‘I have to save this kid,’ and it was a long shot,” Arias said. “I didn’t think it would be on time.”
Daniela’s outlook is looking much better, however she still requires extensive reconstructive surgeries after the treatment of the infection. She and her father still remain at the NIH facility in Maryland.
“In the end, this is a life-changing experience for everyone,” Arias said. “Everybody was incredible and it shows sometimes miracles can happen.”
For more information about Daniela’s condition and to donate to her medical expenses, visit the website for Healing The Children Northeast here.