Middletown family provides equipment to Ironman participants

For many Middletown residents, the Ferrell family’s participation in local triathlons is a familiar sight.  “Team LB” (short for Team Luke/Blake) has participated in many local and statewide events.  Team leader and dad, David, can be seen cycling hard in the bike portion, pulling 16-year-old Blake behind him in a specially-equipped carrier;  in the swim segment, Blake skims Dave’s wake in an inflatable raft; and then, there goes Dave sprinting toward the finish line pushing Blake ahead of him in a specially-outfitted wheelchair.  And, all the while, Blake’s 11-year-old brother Luke is biking, swimming and running too, alongside half a dozen other teammates and friends who are there for support and to help keep an eye on Blake.  Of course, mom Colleen is cheering from the sidelines, never missing a moment.

Blake’s developmental disorder prevents him from walking and speaking, but not from enjoying the exhilaration of each race.  “There is truly nothing more inspiring than seeing Blake enjoy the wind and water, watching his delight at being part of the fun rather than being confined to the sidelines,” says Dave Ferrell.  “He hears the cheers of the crowd as we cross the finish line.  When we cross that line his hands are waving, and his head is moving side to side – Blake’s way of showing he is excited.”

When Blake was born, he missed a number of developmental milestones, and when he was ten months old, he started having seizures. At one point, he was having 150 to 200 seizures a month.  At Children’s Hospital of Philadelphia, he underwent a battery of metabolic and genetic testing and repeated MRIs and EEGs.  The Ferrells began to visit the Kennedy Krieger Institute at Johns Hopkins University, an internationally recognized institution dedicated to improving the lives of individuals with a range of developmental disorders, for intervention.

“With a combination of two different drugs and a Vegus Nerve Stimulator, Blake’s seizures have been reduced to five to ten per month. Sadly, Blake lost what little speech he had worked so hard to attain as a child,” Dave says.

It wasn’t until Blake was already a teen that Dr. Gerald Raymond of Kennedy Kreiger identified his condition:  Blake was diagnosed with an incredibly rare disorder, a mutation of the STXBP1 gene. He is only one of approximately 40 reported cases worldwide.  The disorder is so rare and so new to the medical world that it still does not have a name. 

One night, when Dave was 49, he had the idea to try a triathlon with Blake.  He recalls, “I was 25 pounds overweight. We did not have any of the necessary equipment.  Nonetheless, I contacted the local triathlon club, The Sandy Hookers in Red Bank, to tell them what we wanted to do.  They welcomed us with open arms.”

Preparing for a triathlon is grueling, Dave says.  During the winters he trains six days a week. He swims at the Atlantic Club three days a week, often dragging a parachute to simulate the weight of Blake and his raft.  He runs daily, pushing Blake’s chair, once a week loaded with 50-lb sandbags in the seat.  He trains on a bicycle while pulling Blake’s carrier, also once weekly weighing it down with sandbags. 

Over the years Team LB completed dozens of triathlons, half marathons and 10k and 5k races.  

The response from the community has been amazing, says Dave. “From the event directors to the volunteers to the spectators, everyone loves to see Blake in the races. But it was the other athletes who surprised me the most. Some of these men and women take the triathlon circuit very seriously and I have always made a conscious effort not to impede them. Turns out, these are some of the greatest people. We get athletes flying past us and they are giving Blake a big “Hi!” and “Way to go!” It makes me realize that there is a place for everyone at any table.”

As a financial advisor with Morgan Stanley Wealth Management, Dave always kept his personal life separate from his work.  But as his company began to notice what he and Blake were doing, they became increasingly involved. “I was very hesitant at first, but then I realized that our races provided a vehicle for the people I work with to do good, to help not only my child but others, and to give back to the community at large.  Now Morgan Stanley sponsors many of our races,” Dave notes.

Overall, Dave is content with his lot in life, he says – two wonderful boys, a terrific wife, a great group of friends and a firm that supports his endeavors.  But, he admits, there is something missing.

“I’ve always wanted to do the Ironman.  We have entered video clips as submissions for the Ironman World Championships in Hawaii, but we have not been chosen,” Dave explains sadly.

The organization “Kona Inspired” awards seven slots each year in the Ironman competition for athletes with exceptional stories.

This year, though Dave and Blake were not selected to participate, a “part” of Team LB will be traveling to Kona, HI, in October. 

“One of the teams is Barbara Ann Bernard of Nassau, Bahamas, and her cousin, Win Charles of Aspen, CO., who has cerebral palsy,” Dave says.  “They are the first female team to be selected by Kona Inspired.  Unfortunately, they just had a major setback:  the company that was supposed to engineer a special carrier for Win has canceled the order, leaving them high and dry.” 

As luck would have it, Blake and Win, who is in her twenties, are the same size.  Therefore, Dave decided to lend them Blake’s carriers to use in the competition. “This is the closest we will get to having Blake in the Hawaiian race this year,” says Dave.  “Blake’s chair is now in the Bahamas and will travel to the Big Island before coming home to New Jersey.“

Dave Ferrell is a Vice President and Financial Advisor with the Global Wealth Management Division of Morgan Stanley Wealth Management in Red Bank, NJ. He can be reached at 732-224-3781 or David.C.Ferrell@morganstanley.com.

The information contained in this article is not a solicitation to purchase or sell investments. Any information presented is general in nature and not intended to provide individually tailored investment advice. The strategies and/or investments referenced may not be suitable for all investors as the appropriateness of a particular investment or strategy will depend on an investor's individual circumstances and objectives.  Investing involves risks and there is always the potential of losing money when you invest. The views expressed herein are those of the author and may not necessarily reflect the views of Morgan Stanley Wealth Management, or its affiliates Morgan Stanley Smith Barney, LLC, Member SIPC.