Milla, a healthy newborn, came second behind her older sister Ann Carlyle, and she sported an untamable, curly, brown shock of hair. Her parents, Dana and Frazer, welcomed their daughter – who by all appearances and personality, seemed to be a healthy toddler.
Just before her third birthday, however, she suffered a seizure. Over a year and many tests later, the family finally discovered the truth behind her worsening symptoms: Milla was diagnosed with Batten Disease. A rare, neurodegenerative disease with no cure, Batten causes protein to accumulate in brain cells, killing the cells and resulting in seizures, language problems, and eventually leading to blindness, immobility, dementia, and death. Worse yet, the disease results from an inherited enzyme-related gene. For the Gieselmanns and their three girls, Milla’s diagnosis was only the start.
On a day when they were amidst a move to a new residence, the couple received the devastating news that Elle, the youngest, had also inherited Batten.
For the next three years, the family pulled together, not only managing Milla’s debilitating symptoms, but also starting treatment for Elle. Relying heavily on family, friends, and their Second Presbyterian Church community, the Gieselmanns also found support from complete strangers and the larger Memphis community.
Throughout their journey, the Gieselmanns also turned to the Kemmons Wilson Family Center for Good Grief which, as Frazer said, “was essential to their family’s journey through a grief that is complicated and messy.” The Center also gave refuge to the many friends and family also coping with Milla’s disease.
By late November 2016, Dana and Frazer’s primary focus was keeping Milla comfortable. Blind and immobile, Milla nonetheless brought joy as the couple shared sweet, intimate moments of Milla’s last days both through images and a blog.
On November 26, 2016, Milla died at age six. Hundreds of mourners attended the memorial service for the spirited young girl.
Milla’s story reminds us of the immense loss and grief that life brings unexpectedly. At the Kemmons Wilson Family Center for Good Grief, we exist to serve families like the Gieselmanns.
Because of growing demand, we are expanding with the opening of two new Centers: one in midtown Memphis and a second in Jonesboro, Arkansas.
Thanks to their ongoing commitment to help others find grief support, Dana and Frazer have partnered with the Baptist Memorial Health Care Foundation to raise money for the new midtown Center. The midtown location, the Kemmons Wilson Family Center for Good Grief, Milla’s House, will open in the summer of 2017 on the grounds of Idlewild Presbyterian Church. It is named in memory of Milla.
The NEA Center in Jonesboro will open in October 2017, bringing needed grief services to the region.
With the opening of the new Centers, the Kemmons Wilson Family Center for Good Grief will provide three options for grief services within a 75-mile reach of Memphis.