Sep 28, 2007
Kilimanjaro trek
Redding father and son seek aid for African ‘benefit’ trek
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by Mar Walker
An exotic mountain on a faraway continent, a father-and-son adventure, a bevy of generous contributors and one personable boy-in-need with a rare disease — Bruce Seide’s October vacation plans cover a lot of ground.
Mr. Seide, and his 27-year-old son, Steven, a 1999 Joel Barlow graduate, plan to trek to the top of the Mount Kilimanjaro in Tanzania, Africa — a journey that will thread through multiple climate zones, starting in a rain forest and ending in an icy snow cap.
“You know, I haven’t slept out since Boy Scout camp,” said Mr. Seide with a grin. “While the trip itself constitutes a personal challenge, it is also my hope that this endeavor will make a difference in someone’s life ... My dream is to be up at the top of that mountain with my son and a picture of EJ.”
Mr. Seide met EJ Carfi, a Ridgefield resident, last summer. He calls EJ “the most incredible 10-year-old child one could possibly meet.”
Hazards
EJ was born with epidermolysis bullosa (EB), “a skin disease so severe that the slightest touch can give him blisters,” Mr. Seide said. “Daily life is hazardous for him, to the point that his mother spends two to three hours each morning bandaging him, before he gets on the school bus.”
EJ attends public school in Ridgefield.
Mr. Seide said he’d decided to take a trip to Kilimanjaro a few years back.
“I am a cancer survivor and I decided there was no reason to wait any longer. Then, through a mutual acquaintance, the friend of a friend, I met the Carfi family,” he said.
Combining his trek with a fund-raising venture was right up his alley. Mr. Seide, who has owned Phoenix Marketing for the past 17 years, saw the trek as an opportunity to do good as well as to meet a trekking challenge, and see Kilimanjaro’s icecap.
“With global warming, they are saying in the next 15 years there won’t be anymore ice on the top of the mountain,” he said.
It was also a chance for Mr. Seide and his son to hike side by side. The younger Mr. Seide is graduate of Lehigh University and works in business development and strategic marketing with the Affinion Group in Norwalk, which is a membership marking corporation.
“He’s done a lot of hiking around the United States,” the elder Mr. Seide said with pride. “‘Seide by Seide,’ that’s the headline in my blog.”
Altitude
The mountain is “the largest freestanding mountain on earth, the largest mountain in Africa at around 19,400 feet,” Mr. Seide said. He added that Kilimanjaro is more a trek or a hike than a technical climb like Mount Everest, which stands at roughly 29,000 feet above sea level.
“The big issue with a mountain like this is the altitude. It takes seven days to get up and one and a half days to get down. Going up you have to acclimate to the various levels. When you come down you can just come straight down,” he said.
“I am nervous about the altitude,” Mr. Seide continued, saying that he had been training with Stand Firm Fitness in Wilton since April to prepare for the trip.
This is not the first of Mr. Seide’s efforts to lend a hand. He has lived in Redding for 30 years and has always been “very involved in the community.” He is currently the volunteer assistant varsity basketball coach, and has been the football announcer for the last five years. He is also a former chairman of the Park and Recreation Commission.
Mr. Seide has been planning the trip since last April through an organization in Boston called Thomson Safari. There will be a group of 10 people plus porters. According to the organization, 90% of our group will make it.
“If you have a problem they won’t let you go,” he said.
On the last evening the group of hikers will be camping at 18,800 feet, looking to reach Uhuru Peak on the last day.
“To go that last 600 feet will take two hours. The reason is you have to walk so slowly because the air is thin. The oxygen is half of what it is at sea level,” said Mr. Seide.
Missing gene
EJ and his family face a different sort of challenge daily. Persons with epidermolysis bullosa carry a defective gene and are missing a key collagen factor that forms an anchoring layer of skin.
But the disease is not merely a skin disorder.
Mr. Seide said it affects any place in the body that is ruled by this defective collagen gene, including the eyes and the entire gastrointestinal tract, which includes the inside of the mouth, the throat and the esophagus. EJ has already lost much of the use of his hands, his feet are often covered in open sores, and he is susceptible to infections throughout his body.
“Having met EJ and his family I have been inspired to support their efforts to give EJ as happy and fulfilled a lifestyle as is possible,” he said. “EJ attends public school each day. However, this doesn’t happen without a lot of courage on his part, and selfless sacrifice on the part of his mother and father.”
Mr. Seide added that expenses not covered by the family’s medical insurance run between $10,000 and $20,000. All the funds raised by the Seides’ trek will go toward a medical fund for EJ, his parents say. It will cover medical bandages, surgeries, special foods, and attendance at a special summer camp.
The Seides will leave Oct. 4 on their trek. As of Sept. 18 they had raised around $9,225 for the Carfi family.
“They are the greatest, a loving, caring family unit, and they try to make life as normal as possible for EJ,” Mr. Seide said.
“This summer he went to a special camp in California. The preparation to get him there was incredible and his parents had to stay in a motel nearby. The Ridgefield Fire Department provided the funds. There has been a tremendous support network in the Ridgefield community,” he said.
“I hope you’ll join me in supporting this family by making a contribution,” he added.
Checks made out to George and Jody Carfi may be sent to Mr. Seide at P.O. Box 599, Georgetown, CT 06829. Mr. Seide has also set up a blog for his trip at www.bseide.blogspot.com.
For more information about epidermolysis bullosa, visit www.debra.org.
© Copyright 2008 by Hersam Acorn Newspapers
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