Memphis girl, 6, loses battle to rare brain disease
Nov. 28 at Second Presbyterian Church in East Memphis, hundreds of people stood in a line that stretched around a fellowship hall and far down a hallway to pay respects to the family of a young girl who died after battling a rare, neurodegenerative disease.
Six-year-old Milla Gieselmann, one of two Memphis sisters whose ordeal with Batten disease was chronicled in a recent story in The Commercial Appeal, died Nov. 26, a little over two years after she was diagnosed with the incurable ailment.
Milla and her younger sister, Elle, 4, both inherited Batten, a disease that causes protein to accumulate in brain cells, killing the cells and triggering symptoms that often begin with language problems and progress to seizures, the inability to walk, blindness and dementia. Most sufferers die by age 16.
Although there is no cure for the disease, Elle is participating in a clinical trial of Brineura, a drug that shows promise of slowing or stabilizing the deOn generative effects of Batten.
She had been traveling every two weeks to Nationwide Children’s Hospital in Columbus, Ohio, where the trial is being conducted, to receive infusions of the drug.
Seven-year-old Ann Carlyle Gieselmann, the eldest daughter of Frazer and Dana Gieselmann, tested negative for the disease.
In her blog about the family’s challenges, Dana Gieselman said the family requests that in lieu of flowers, memorials be made to the Baptist Kemmons Wilson Family Center for Good Grief.