The pharmaceutical giant GlaxoSmithKline has agreed to ship the Mumm family and two others their remaining supply of the drug, Potiga.
One-year-old Christian was born with a rare, genetic mutation causing him to have severe and frequent seizures. His condition has also left him with a terminal prognosis.
Christian’s parents and doctors said Potiga is one of several they have tried, but is the only one that eases the debilitating seizures and allows the little boy to have quality of life.
Potiga was manufactured by GSK, but was taken off the market in June. The Mumm’s were pleading with the company to make the medication available on a what’s called a “compassion use basis.”
Their fight caught the attention of Congressman John Larson who stepped in to bring their request to the FDA and other U.S. government departments. His team’s work ultimately lead to a meeting between the drug company, Christian’s doctors, and the Mumm’s.
“It was not a small task and it was one that took a lot of strength and courage and one that we couldn’t have done without Congressman Larson’s help,” Erica Mumm said.
Christian has one twin brother, one older brothers and two older sisters. He is currently being cared for at the Hospital for Special Care.