Articles


ABOUT A BOY

by Debra Kerper

This is a story about a boy (who grew into an exceptional young man) that I had the pleasure of knowing and working with. His name is Glenn and he had a very profound impact on my life.

My first encounter with Glenn was when he was about 12 years old. His mom called me and asked if I could help her plan a family cruise for spring break. I remember that call so vividly. I was in Florida for a SATH (Society for Accessible Travel & Hospitality) Congress and we were just finishing a ship inspection. While I waited for the rest of the group, I decided to check my messages and return some phone calls. They wanted a Caribbean Cruise, very specific dates, and they needed three wheelchair accessible staterooms as close together as possible. My heart sank. I had an instant rapport with Glenn’s mom, Glenda, and my immediate thought was that this would be close to impossible. The date they wanted was just a little more than two months out and high season to boot! Glenda explained that her son had Duchenne Muscular Dystrophy and used a power wheelchair and he was so excited about going on a cruise. He dreamed of being an engineer and had built a model of a cruise ship out of K’Nex building pieces. She went on to say that her mother would be going and also needed an accessible cabin as she was living with cancer and had difficulty getting around. Glenda’s sister needed an accessible cabin as well and I was really starting to worry about making this trip a reality for them. I don’t remember how many sailings I checked on but luck was with me that day. The Caribbean Princess would be sailing on the day they wanted and they had three accessible balcony staterooms available within close proximity. That was the start of a wonderful relationship between me and Glenda and her mom.

I guess this is a good time to mention that I’ve never actually met any of them. This was a phone and email relationship that grew into such fondness and caring for this exceptional family. I always felt good after talking to either Glenda or her mom, Linda. I’ll talk more about Linda later.

So, the group of six went on their cruise in March, 2006 and had a wonderful time. Glenn charmed the crew and was invited on a private visit to the ship’s bridge by the captain. When he returned home, he began making modifications to his model ship to mirror the Caribbean Princess. Glenn’s love of cruising and large cruise ships actually began in 2000 when Make-A-Wish sent him on a cruise to the Bahamas and Cozumel where he got to swim with the dolphins. Glenn entered his model ship into a contest sponsored by K’Nex Building Pieces. Unfortunately, he turned 13 and was not eligible for the contest but the company was so impressed with his entry that they invited Glenn to their headquarters where he had a tour and a meeting with the directors.

Over the next few years Glenn concentrated on his schoolwork, worked on his model ship and fought his everyday battles with muscular dystrophy. His beloved grandma Linda succumbed to cancer in 2008. A scholarship was set up in her memory at Glenn’s high school to encourage students to reach out to children with disabilities.

Over the years I kept in touch with Glenda and was told that Glenn spent Christmas, 2009 in Children’s Hospital in Washington, DC. Mrs. Obama was visiting children that day but Glenn was in surgery having a pacemaker/defibrillator inserted to help his weakened heart. Mrs. Obama spent some time with Glenda and family and said a prayer for Glenn with them.

Soon after that, Glenda called and said Glenn was putting together his Bucket List. I hung up the phone and cried for this courageous young man who was facing his own mortality at the young age of 18. She asked if I could help make some of his dreams come true. “Where does he want to go?”, I asked. Glenn’s dream was to cruise on Royal Caribbean’s Oasis of The Seas, the largest cruise ship in the world at the time. Glenn was going to graduate high school early and was set to sail in May, 2010. I knew this had to be special for Glenn. He had continued to modify his model ship and it was now named K’Nector of The Seas after all the Royal Caribbean ships. I imposed upon my friendship with the Director of Access for RCCL and enlisted his help to do something special for Glenn. He came through with flying colors! Glenn and his family arrived in Ft. Lauderdale a day before the cruise and were invited to visit the Miami headquarters of Royal Caribbean where Glenn met with the ship architects and spoke to them of his desire to be an engineer/architect. During his cruise, Glenn was given a private tour of the belly of the ship where he could see all the inner workings of the Oasis of The Seas in addition to a tour of the bridge by the captain.

On August 22, 2010 Glenn sent a “thank-you” email to several RCCL staff members after apologizing for taking so long to write. He said he had some medical issues to deal with but was “stable again”. He wrote that the tour of headquarters was one of the main highlights of his life and that everyone and everything was so special. He said access on the ship was great and he only had one thing that he would change; the information touch screens throughout the ship should have the bathrooms on the search category as a venue! He said his mom had one question; was there an RCCL ship that could take them to Corpus Christi, TX from Virginia so that he could have some new experimental therapy to slow down the progression of his illness? Glenn went on to say that his experience on the Oasis of The Seas was one he would never forget.

It is with much sadness that I must tell you Glenn passed away on October 19, 2010 on his mother’s birthday from respiratory failure. He was 18 years old and a remarkable young man who brought joy to everyone who knew him. The model ship he was so proud of was paraded through the streets of his town, over eight feet long and more than 10,000 plastic pieces.

Glenn had one more cruise to sail on. Shortly after his death, his mom called and said she wanted to take all of Glenn’s caregivers on a cruise. She didn’t care where the ship went as long as it was Royal Caribbean and it would be at sea on January 11, 2011. So on 1/11/11 at exactly 1:11pm with his family and caregivers and the captain of the Enchantment of The Seas, Glen went to his final resting place as his ashes were sent out into the Caribbean Ocean that he loved so much.

Working with Glenn and his family is truly a highlight of my many years in the travel industry and makes what I do so very worthwhile.


An Improbable Tale of the High Seas
How Glenn Mikulak’s ship is taking him around the world

By Roger Bianchini
Warren County Report

For most people, me included, memories of a nice trip, whether it be on a ship or by another mode of transportation are generally recorded in our sometimes flawed memory banks or on photographs soon to be curled and yellowing in some forgotten scrap book.

But for Warren County High senior Glenn Mikulak, the memories of a 2006 trip with his late grandmother, Linda Hogoboom, on a Caribbean cruise ship were translated into an astonishing reconstruction of a cruise ship. On April 21st Glenn brought his ship, appropriately christened “K’nector of the Seas” of the Royal K’nibbean Line since it is made of approximately 10,000 K'NEX pieces, for display in the Warren County High lobby. The reactions of classmates, teachers and even Principal Ernestine Jordan mirrored my own reaction.
“That’s awesome!”
“Glenn, that’s incredible – did you draw a picture of it first?” “No, I just started building it,” Glenn replied.
“I couldn’t do that if I had my whole life to finish it,” one student exclaimed.
As we snapped photos and students passed by, crowds gathered, dispersed and re-gathered around the lunch hour bells. Whatever the changing makeup of the crowd, the tone of awe and respect for Glenn’s accomplishment never varied.

Glenn beamed like a proud pop, answered questions, pointed to moving parts at the stern rudder and props – “No, it’s not broken,” he explained to one teacher, “it’s supposed to move there.” I believe he said there were eight moving parts, mostly tied to the re-creation of the ship’s propulsion system.
The fact Glenn oversaw the event from his wheelchair underscores perhaps the added awe with which his classmates viewed his achievement. Glenn suffers from a form of Muscular Dystrophy known as Duchenne, an irreversible deterioration of the muscular system. As a consequence of his condition, Glenn’s has a reduced life expectancy and must face that fact each day of his life.
Glenn’s outlook is an inspiration to all, yours truly included. We asked Glenn how he does it.

“Designing and building is my passion,” he told us. “I try to use all that I have and make the best of it. I anticipate the cure in the future. While it’s getting harder and harder for me everyday physically, I am doing all I can. It’s discouraging at times but I am still creating and building. I hope I’m an inspiration to other people. This ship will be my legacy.”

A minor setback

In December of 2009 Glenn was hospitalized with congestive heart failure associated with his condition. By coincidence the First Lady was making an annual round of hospital visits in the area and put Glenn on her “Green List” of visits.
While Glenn had not yet awoken from surgery, Michelle Obama comforted his parents and offered them her support and prayers.
“The comfort the family received from the First Lady was unparalleled,” Glenda Mikulak told us. And while Glenn was disappointed to have missed Mrs. Obama’s visit he was glad his parents and friend Joe Bacik had someone to talk to while he was still under, in recovery.

“But we have the White House on Glenn’s radar – maybe next time, Mrs. Obama,” Glenda Mikulak told us, adding she was pondering an invite to graduation for that delayed “Green List” visit. – Hey, if you’re going to dream, why not dream BIG!!!
Once back from ICU about two weeks after that December 2009 setback, Glenn and his family began assembling a wish list, or as they jokingly call it from the film of the same name, a “bucket list.”

A Seafaring K’nextion

Recently Glenn began researching the new Royal Caribbean International ship “Oasis of the Seas,” the largest ship of its kind. A cruise was booked and Glenn began updating K’nector of the Seas in anticipation of his upcoming cruise slated for May 22nd. Easy Access Travel arranged a meeting at Royal Caribbean headquarters in Florida on May 21st and Glenn hopes to get a behind the scenes tour of “Oasis of the Seas” while at sea. However it pans out, the family is calling it “A Royal K’nextion.
Glenn finished his high school senior credits early and began devoting his extra time on refitting and expanding his initial six weeks of work on K’nector of the Seas. That “drydock” work took another three weeks, he told us.
Glenn’s mom documented Glenn’s “shipbuilding” achievement for us.

“The ship was built in 2006 following a cruise with Glenn’s Grandmother. While on the ship he got a behind the scenes tour of the bridge and met the captain. Thus inspired he came home and started building the ship out of K’nex, all from memory and photos.”
Now as an old builder of model airplanes and ships as a kid, this achievement made without benefit of a specific kit design or directions, is especially impressive. You sure you didn’t have some kind of guideline? I asked.
“No kit was used, all from my head, designed by me,” he assured us.
Gee Glenn, you’re making me feel like a model building dunce – and I thought I was pretty good at the time … well, it was a looong time ago, I admitted.

Glenn’s plan to enter the ship in a contest sponsored by K’NEX was nixed because he was over the age limit. However K’NEX management was so impressed by his achievement that Glenn was invited to tour the company headquarters and factory where he viewed the molding process. He had lunch with upper management (CEO and CFO) and the company’s design team and took home some souvenirs of the visit.

But with a career and continuing educational interest in engineering and a dream job as a part of the K’NEX design team, the visit and personal connections he made may have been the biggest prize of all. With plans to use the ship as a source of inspiration to others in postcards, posters and photos, his family re-contacted the company and asked for permission to use the company name in this context.
K’NEX responded with not only a release to use the K’NEX name and images but also offered the assistance of their Public Relations Department, as well as an invite back to the K’NEX Hatfield, Pennsylvania factory at his convenience.

Sailing your way?

Glenn will graduate from WCHS with honors on June 11th. And with K’nector of the Seas maiden voyage out of his house and into his school under his belt, Glenn would like to announce the availability of the ship and its captain to other similar venues, including area schools, hospitals and retirement homes. Glenn may be reached by e-mail at glenn@glennship.com
His mom points out that just as Forrest Gump was inadvertently able to travel the world through unexpected turns of fate, Glenn’s creation of “K’nector of the Seas” has taken him places he may never have expected to see.
On August 10th, 2009, Glenn was invited to National Harbor to tour the Harbor and Gaylord by The Peterson Companies. Operations there declared it Glenn Mikulak Day and he met with engineers and got another tour, this time of hotel operations, the engineering department, including the computers that control the building, the HVAC system and the laundry and boiler rooms.

Along with the College Access Network and the Warren Coalition, Glenda Mikulak has created the Linda F. Hogoboom Memorial Scholarship in memory of her mother and Glenn’s grandmother with whom he first sailed the high seas. The $1,000 scholarship encourages students to reach out to children with disabilities. It was recently awarded to Sara Kenney and Lynnze Hall Watkins.