About a Boy

By Debra Kerper (used with permission)

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.