In July 2014, Raleigh resident Neil Ramquist – a 1989 NC State graduate with a degree in industrial engineering – will climb Mt. Kilimanjaro, the tallest free-standing mountain in the world. But he won’t be doing it alone.
Ramquist will be joined on the expedition by his 10-year-old son Charlie. “Around the age of 2 or 3,” Ramquist says, “Charlie was diagnosed with a rare inflammatory disease called eosinophilic esophagitis (EE), which simply put means he’s actively allergic to almost all foods.”
Eosinophilic esophagitis is a disease in which the body produces an excess of esophageal eosinophils – a type of white blood cell – causing chronic inflammation, tissue damage and potentially permanent scarring in the throat and upper gastrointestinal tract.
Ramquist and his son are members of Team Climb for EE (Team Kili) – a diverse group of individuals including adolescents and adults diagnosed with EE, relatives and family friends of those affected by EE, as well as doctors, college students and outdoor enthusiasts, all hoping to raise money and awareness for the disease through the CURED Foundation.
Next summer, Team Kili will travel to Mt. Kilimanjaro in Tanzania, Africa. Before beginning the 37-mile hike, Ramquist, Charlie and the rest of the group will spend a few days volunteering at a small orphanage for children.
For many of the climbers diagnosed with EE, preparations for the trip have already started. “This will require a lot of physical training, and we’re going to be dealing with a lot of dietary restrictions,” says Ramquist, who manages a team specializing in green energy development for Siemens Smart Grid. “Currently, there are only eight foods my son can eat, such as turkey, chicken, sweet potatoes, cucumbers, carrots and tomatoes. A handful of the kids going, however, can only have formula.”
“As a protective dad, the idea of my 10-year-old son doing something like this is nerve-racking,” Ramquist says. It was ultimately the enthusiastic “You should go for it!” from his wife, who started a local EE support group in Raleigh, that convinced Ramquist to submit his and Charlie’s applications for the Climb for EE expedition.
Ramquist is grateful that the trip has given his family “an avenue to talk more about what we’re going through.” “Now,” he says, “we’ve accepted the disease, and we’re trying to figure out how to handle it. We don’t want Charlie to feel like a victim, but I also don’t think he understands what it will be like for the rest of his life – especially the medical aspects like the cost of formula and dealing with insurance companies.”
Additionally, Ramquist worries about Charlie’s matter-of-fact outlook. “Charlie asked me the other day, ‘I wonder what will be the first thing I’ll eat when we find a cure,’” Ramquist says. “For someone who can barely eat anything, he loves going out to dinner. He’ll walk around smelling what people have ordered, and then rate which foods he thinks would taste the best.”
Charlie was first hospitalized when he was three months old, and it’s been an uphill battle since for him, his parents and his older sister. “We fed him milk supplemented with formula every three hours, day and night. It was a very intense period – a lot of time and effort spent trying to get him to grow,” Ramquist says. Charlie’s symptoms, such as difficulty swallowing and inexplicable abdominal pain, persisted for a few years until he received his official diagnosis. “The only way to confirm EE is through an endoscopy and a tissue biopsy of the esophagus,” says Ramquist.
“We’re incredibly fortunate that Charlie’s pediatrician was really young and had just learned about EE during his residency,” he says. “Most doctors who graduated from medical school more than 10 or 15 years ago have little to no experience with EE and often misdiagnose it as other gastrointestinal disorders. The diagnostic process for Charlie – though it seemed like forever at the time – was much quicker than it is for a lot of kids.”
Shortly thereafter, Ramquist and his wife found out about the leading facility in research on EE, the Cincinnati Center for Eosinophilic Disorders (CCED) of Cincinnati Children’s Hospital. “We elected to participate in one of their clinical trials on allergy testing,” says Ramquist. “Once we finished the trial and had an idea of which food antigens Charlie’s system could and couldn’t handle, we started the long and challenging process of gradually introducing a single food – we’re currently working on watermelon – and then waiting to see how he physically reacts to them.”
This trial-and-error process, combined with endoscopies and biopsies every 3-4 months, is common among patients with EE. The medication regimen for EE generally includes steroids, which coat the esophagus, and antacids. So far, there is no cure, but Ramquist hopes the money raised by the Climb for EE expedition will make a difference.
“This disease is really starting to impact adults as well as children, and it’s increasing significantly in prevalence. We need to raise money, and we need to spread awareness,” Ramquist says. If Team Kili reaches their fundraising goal, they’re hoping to give the CURED Foundation a check for approximately $200,000. “That would be one of the largest donations CURED has ever received, and 100 percent of the funds are applied to research for eosinophilic disease.”
Donations can be made directly through the CURED website. Contributions from corporate sponsors, individual donors, and equipment sponsors can be designated for a specific climber through the Climb for EE team support site.