During a ski trip to Tahoe with his family, Boulder Creek resident Ramey White was stricken with Guillain-Barre Syndrome, which is sometimes fatal and has turned his life upside down.
On Jan. 23, Ramey began feeling numbness in his legs after a day of teaching his six-year-old son Ryder how to ski. He awoke that night with intolerable leg pain and his fiancée Lindsay Jamieson, subsequently rushed him to the hospital in South Lake Tahoe. Upon arrival, several tests were conducted to determine the cause of the pain and numbness, but no cause could be found.
White was transferred to Renown Hospital in Reno and remained in the hospital for five days before he received a diagnosis of Guillain-Barre Syndrome or GBS, which is an autoimmune disease that attacks the nervous system. By day seven, the paralysis reached his diaphragm and he could no longer breathe without the assistance of a ventilator, Jamieson said.
“It can be triggered by a flu shot, but he didn’t get a flu shot,” she said. “It can be triggered by a virus like the common cold, but he didn’t have a cold that recently, so they think it was totally random.”
GBS is an ascending disease that starts from the feet, works its way up, and can last anywhere from one to three years depending on the severity of the case.
Unfortunately, White has a severe case that has given him additional complications, such as heart and kidney problems.
“The idea was that we would be at the long-term place for 30 days-ish until he could get off the ventilator, but right now he has had pneumonia for about five weeks,” Jamieson said.
White is on numerous medications, treatments, and painkillers to help his body recover. He currently still on the ventilator and Jamieson has plans to move him to Dominican Hospital once he is stable enough to be transferred.
“I find comfort in the fact that I know what my job is and what I need to do for the next two years, and that is to take care of my boys,” Jamieson explained.
The couple’s six-year-old and seven-month-old children are staying with family so that Jamieson can be with White while he battles for his life.
“He is really unstable right now and I know that I need to be here 100 percent for him,” Jamieson said. “It’s not easy, we have a baby and a six-year-old, we are on day 39 of this, so we are missing a lot; our baby got his teeth, he learned to crawl, and he is eating solids.”
Boulder Creek community members and neighbors have rallied together to help support White and his family.
“Financially, we are doing fundraisers and people have been so generous with everything — the prayers, support, love, and financially,” Jamieson said. “Our Gofundme.com account has gotten $51,000 so far and we are probably going to need help to figure out how we are going to pay our rent and bills for at least two years.”
A group of neighbors have banded together to plan fundraising events for the family. Beth Volz, a media relations and marketing communications professional, is a part of the group that is helping to publicize the family’s plight. They are meeting this weekend to talk about future fundraising events.
“These people are a really dear family; they are our next-door neighbors, and again, I am just so happy to be part of a community where people really care about each other and help each other,” Volz explained. “It’s heartwarming, it’s gratifying.”
A tea party will be held on Saturday to raise funds for the family. Internationally renowned flutist Deborah Yates is set to perform and there will be a silent auction and door prizes with gifts from local artisans and businesses.
The event will run from 3 to 5 p.m. at 244 W. Hilton Drive in Boulder Creek. The cost is $30 per person.
Maggie Barr, the group meet-up coordinator, has helped spearhead the fundraising efforts.
She said she wants to have four events in 2015 so that people don’t forget about the family’s plight. The group is planning another event, which will be a spaghetti feed with a live band.
“The family is going to need help for a long time and I am sure that the medical bills are going to be something that they are going to be dealing with for many years to come,” Barr said.
Jamieson said that the hospital costs are upwards of at least $1 million and that the family will also have to move because they will need a home that is specially designed for White’s recovery.
Once the worst of the disease passes, she said, White will have to learn to walk and talk again.
“I want to say ‘thank you’ to everyone for the support and the love,” Jamieson said. “We can feel it, even in Reno and it helps a lot for both of us.”
Follow Ramey White’s recovery and donate at http://www.gofundme.com/RallyForRamey
To volunteer for the group or for more information on events visit www.meetup.com/Boulder-Creek-Fundraising-Meetup.
