With her wide dark-colored eyes and soft smile, it’s hard to imagine a 3-month-old baby like Wren Garcia is battling a terminal disease.
She has Vanishing White Matter, a neurological condition that destroys myelin, the brain’s white matter. This permanently affects transmission of brain signals to the rest of the body.
Wren’s older sister, Winter — whom she’s never met — suffered from the same disease and died at 8 months old.
“It’s untreatable, fatal, and painful,” said Megan Garcia, the girl’s mother. “Winter cried in pain constantly and Wren will go through it. The earlier the symptoms start, the sooner you’ll go.”
Unfortunately, it’s a recessive genetic disease; both parents carry the mutation and pass it on to their child.
There’s no cure; there may be a partial recovery following symptoms and seizure episodes — or it may lead to a coma and death.
The disease is rare and less than 250 people worldwide are known to suffer from it, according to the Vanishing White Matter Families Foundation.
The symptoms include loss of motor skills and vision, epileptic seizures, and inability to swallow.
With that, baby Wren and her family need help from the local community to not only cover hospital costs, but to donate funds to the doctors searching for a cure.
The Garcia family is holding a fundraiser downtown Carson City during one of the monthly Wine Walks as an opportunity to raise money and educate the public about the disease.
“There are only two medical research doctors in the world who are working on finding a cure,” Garcia said. “For people to show up would be beneficial.”
According to the VWM Families Foundation, the doctors — Professor Orna Elroy-Stein in Tel Aviv and Dr. Marjo van der Knaap in Amsterdam — are the only two doctors conducting research and are in need of equipment.
The VWM Families Foundation is looking to raise $1 million to help. Currently, about $80,000 has been raised.
The Garcia family’s goal is to raise $5,000 for the foundation. In order to proceed, Garcia and her husband, Terrance, are looking for gift cards and prizes donated from local businesses to raffle off at their event, and maybe even a live show. Silver Hills Community Church is sponsoring the event.
On top of community support, Wren is lucky to have support from her older brother, Anakin, 3 — also Winter’s twin.
“This is his Wren,” Garcia said. “He doesn’t remember his twin sister, but he will remember Wren.”