For Beffy Miller, the uncertainty is excruciating.
The owner of the popular St. Augustine salon Hair Slayer & Co. is facing a mother’s worst nightmare after her cute as a button 20-month old daughter was recently diagnosed with a pair of extremely rare conditions.
Little Lula Gietz is suffering from Chiari Malformation Type I and papilledema—conditions that have left local doctors stumped and the suffering mom in dire need of clarity.
Chiari Malformation Type I is a structural abnormality where the lower part of the brain extends into the spinal canal, potentially causing headaches, balance problems, and nerve issues.
Papilledema is a serious swelling of the optic nerve caused by increased intracranial pressure.
LIGHTNING STRIKE VICTIM GIVES FIRST STATEMENT
Despite extensive testing at Wolfson Children’s Hospital in Jacksonville, the source of the pressure remains unknown, according to a GoFundMe campaign established by Miller’s friend.
Beffy and her family planned to travel to Bascom Palmer Eye Institute in Miami, where two top specialists—both in-network—are hopeful they can help.
Miller expects to remain in Miami for several weeks, forcing her to temporarily step away from her only source of income.
“Thank you so much to those of yall who thought to create this for our girl,” Miller wrote on Instagram. “We’re humbled by the constant love and support we have.”
In addition to material help, she asked the community to appeal to a higher power as she navigates the ordeal.
“Anything helps and if you can’t donate please send those mighty prayers,” she wrote. “We truly believe in you in the power of prayers.”
