Father and son plan Mt. Kilimanjaro climb to help raise research funding for eosinophilic esophagitis

sbarr@newsobserver.comJanuary 11, 2014 

Charlie and Neil Ramquist climbed Mt. Washington in New Hampshire last summer in preparation for their climb of Mt. Kilimanjaro this summer to help raise funds for research into eosinophilic esophagitis.

COURTESY NEIL RAMQUIST

— Charlie Ramquist, 10, thought it was a joke the first time someone suggested he climb Mt. Kilimanjaro in Tanzania with his father.

After all, as Charlie had learned in fourth grade, Mt. Kilimanjaro is the tallest free-standing mountain in the world. Hikers take days to reach the top of the mountain, an elevation of about 19,340 feet. It’s no ordinary walk in the park.

But the suggestion was a serious one – and there was a twist. The climb would raise money for research into eosinophilic esophagitis, an inflammatory disease of the esophagus that can make it difficult for those with the disease to eat regular food.

For Charlie, who has the disease, the fundraiser was a compelling reason to make the trip.

“Why wouldn’t I want to help other people who are having to go through the same thing as me?” said Charlie, now a fifth-grader at Ravenscroft School. His father, Neil Ramquist, 47, signed up first. As soon as Charlie found out he met the age requirement, he signed up, too.

This summer, the father and son pair will be a part of a team of 30 people who will climb Mt. Kilimanjaro for the fundraiser. They’re hoping to donate $150,000 to CURED, a nonprofit foundation dedicated to those with eosinophilic esophagitis and related diseases.

Life with EoE

Eosinophilic esophagitis, often shortened to EoE or EE, is a chronic disease that occurs when there is an increased number of white blood cells known as eosiophils in the esophagus, which can cause cause tissue damage, according to the American Partnership for Eosinophilic Disorders.

EoE can be triggered by food allergies, and common symptoms of the disease include reflux that does not respond to medication, difficulty swallowing, nausea, vomiting and even failure to thrive.

The last of these is what sent Neil and his wife to the hospital when Charlie was just three months old. It took months to find a diagnosis, a time of sickness and pain for Charlie.

And once the family had a diagnosis of EE, the constant process of managing the disease began. It includes carefully monitoring foods, regular testing to see how Charlie is faring, and slowly introducing new foods to his diet to see how his body reacts.

These days, Charlie can eat only eight foods: potatoes, sweet potatoes, cucumbers, carrots, tomatoes, quinoa, turkey and chicken. Salt and sugar are fine, but other seasonings cause problems. Last week, he underwent testing to see if he might add honey and strawberries.

To make sure he gets proper nutrition, Charlie also depends on formula. Neil said the family counts themselves fortunate that their health insurance company helps cover the costs of the formula. Not every insurer does, and the costs can be a significant financial hardship for families.

Charlie said he knows many people would consider him unlucky, but he takes an upbeat, philosophical approach to things. At restaurants, he rates his family’s dinners based on what smells the best. He has become a salt connoisseur. He’s understanding of the fact that some people will have tougher time than others with the disease.

“The most important thing is to have a positive attitude,” he said.

Preparing to climb

That’s the mantra Charlie and Neil plan to bring to Mt. Kilimanjaro. They’ve been preparing for the climb for months by taking hikes and camping trips in various conditions. They say they’re physically fit and ready to take on the mental challenge of the their 37-mile trek.

They’ve also gotten to know other members of the team, about half of whom have EE. It’s been nice meeting people who understand what life with EE is like, said Charlie.

Neil said preparing for the trip has been a great way to spend more time with Charlie. Plus, it’s helped him open up about the disease. He and his wife have been a resource for years for families with a new diagnosis of EE, but he didn’t often talk about it with people outside a small circle of family and friends.

He’s been pleased to find people are understanding and appreciative of the knowledge he shares about EE.

“Talking about it more, it helps,” he said. “It’s nice for people to know what we’re going through.”

More information about the team and the climb, including details about donations or sponsorships, is at climbforee.org.

Barr: 919-836-4952

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