This month I’m putting a link in the sidebar to encourage you to register for Miles 4 Milla’s House, benefiting The Kemmons Wilson Family Center for Good Grief, on May 20. Alternatively, you could give directly to KW Family Center for Good Grief here (choose either “Milla’s House” or “Kemmons Wilson Family Center for Good Grief”) in the Designation spot.
Please, Readers, will you consider a $25 donation to this cause? I’m registering to ride, though I may or may not be out of town May 20. If I’m in town, I’ll be at Wiseacre, if I’m out of town, I’ll be there in spirit.
I know this family through friends of friends and have been following their journey battling Batten disease for a few years. 2 of their 3 daughters were diagnosed with this disease, and Milla lost her battle this past year. Elle is still fighting it.EMM featured charity this month is #miles4milla @baptistonline Click To Tweet
Here is the first article the CA wrote about this brave family.
“Six-year-old Milla and 4-year-old Elle Gieselmann are battling Batten disease, an inherited neurodegenerative disorder for which there is no cure. Their older sister, 7-year-old Ann Carlyle Gieselmann, tested negative for the disease and is healthy.”
About Batten Disease
“Batten is among a group of related neurological disorders occurring in 2-4 of every 100,000 live births in the U.S., according to the National Institutes of Health. It is caused by a mutation of a gene that shuts down the enzyme activity needed to metabolize proteins in cells in the brain and other organs. As a result, proteins and lipids accumulate, killing brain cells and triggering a process like Alzheimer’s, only quicker. Although the children appear normal at birth, by age 2-4, symptoms such as language problems set in, progressing to seizures, the inability to walk, blindness and dementia. Most sufferers die by age 16.”
Here is their article when Milla passed into eternity on November 26, 2016.
“At Second Presbyterian Church in East Memphis, hundreds of people stood in a line Monday evening 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.”
Read Milla’s obituary here.
This Baptist press release on March 1, 2017 announces two new grief centers in Midtown Memphis and Jonesboro, Ark.
“The midtown location, the Kemmons Wilson Family Center for Good Grief, Milla’s House, will open this summer on the grounds of Idlewild Presbyterian Church. Dana, Frazer’s wife and Milla’s mother, said the family is proud to support the opening of the Midtown location, “while also honoring our daughter Milla. Her short life of six years touched so many. Our hope is that Milla’s House will provide the help our community needs to deal with the reality of living in a broken world.”
That leads us to the fundraiser on May 20, a bike ride with 2 distance options and a no-ride option. A $25 fee includes a tshirt and your first beer.
Here is further reading about an experimental drug making progress.
“Elle’s dad, Frazer Gieselmann, said that while the disease remains incurable, the drug has arrested its degenerative effects.”She’s not getting better. (But) it has definitely slowed the progression of the disease,” he said.”
Updated 5/12/17 to add: Losing a Child without Losing Faith article about the Gieselmann’s ongoing faith.
Updated 5/12/17 to add: This awesome kids book is uplifting and all profits go to the family’s trust fund.