The Dispatch | Joanne Shriner | Oct. 25, 2013
OCEAN CITY – Al DeCesaris Jr. finished a 3,000-mile journey across the United States in Ocean City on Tuesday all in the name of his niece and others who suffer from Sturge-Weber Syndrome (SWS).
Crossing America For A Cure is a fundraiser hosted by the Celebrate Hope Foundation, Inc., which is a non-profit charitable organization. DeCesaris and his sister, Ida Heck, from Annapolis, created the fundraiser in honor of Ida’s daughter, Jenna, 9, who was born with SWS, a devastating neurological disorder.
SWS is a congenital, neurological disorder most readily identifiable by a port wine birthmark that presents on the face of those affected, and causes blood vessel abnormalities in the brain, skin and eyes. These abnormalities cause countless health complications that include seizures and glaucoma. Seizures are unpredictable and vary in length and severity and can lead to strokes, mental retardation, developmental delays, learning disabilities, migraines, vision impairment, paralysis and even death.
Jenna and others affected by SWS receive care and treatment at the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute, an internationally recognized institution dedicated to the diagnosis, research, and treatment of SWS.
Eight years ago, the DeCesaris and Heck families started a concert and auction fundraiser called Bands on the Bay that has raised over $1 million for the Hunter Nelson Sturge-Weber Center. These funds directly support the development of new strategies to reduce brain injury and other adverse effects of the disorder, provided treatment for patients without medical insurance and most recently funded the research that led to the discovery of the cause of SWS.
“Last year my sister and I got to talking how we needed to create awareness in different parts of the country, branch out and spread the word in different areas. So, we started brainstorming and the next thing we know the idea was for me to be on a bike spreading the word all across America, and that’s what we did,” DeCesaris said.
With no experience in cycling, DeCesaris began training for his journey only three weeks before he left on Sept. 8 for a 45-day trip traveling 3,000 miles across 13 states starting in Santa Monica, Calif. ending in Ocean City.
In partnership with his sister, Heck would map out his route every night looking for the easiest routes with the least amount of elevation and best biking conditions. DeCesaris biked an average of 80 miles a day solo. He became part of the Warm Showers Community that is a free worldwide hospitality exchange for touring cyclists with people who are willing to host touring cyclists and have them stay with them.
DeCesaris biked 41 days out of the 45-day trip as he took a few days off to visit other children suffering from SWS. Along the way, he stopped at the St. Louis Children’s Hospital where he met Paige McGrady and Lynn Ray, two children suffering from SWS. In Pittsburgh, DeCesaris met former NFL Steelers pro-bowler Alan Faneca, whose daughter, Anabelle, suffers from SWS. Once hearing DeCesaris’ story, Faneca committed to matching all the funds raised along the way. Also, a couple of days ago on his way to Ocean City he stopped in Sussex County, Del. where he met the Hastings family and their daughter, Stella, who has been diagnosed with SWS.
“The highlight was just a few days ago when I stopped at Jenna’s elementary school and got to see the look on her face when I rode up on my bike with all of her friends and classmates standing at her side,” he said.
There were a few downsides to the journey, DeCesaris admitted, such as riding through the Mojave Desert, or a 70-mile stretch along Interstate 40 with no rest stops, climbing 7,000 feet above sea level into Flagstaff, Ariz., and even getting caught in a major storm.
“I don’t know if it has sunk in … it is really incredible today to see not only my niece Jenna is here and see her excitement, but meeting the Hastings and Stella. To have them see what I have done and how it has touched their lives, it is an incredible feeling that I am still trying to process,” DeCesaris said on Tuesday after he crossed the finish line at the Original Greene Turtle on 116th Street. “As far as biking, it doesn’t feel like I am done. I feel like I need to get back out there.”
Crossing America For A Cure has raised almost $30,000 and with Faneca’s matching funds plus a few more scheduled fundraisers in the next several days the campaign should raise over $60,000.
“The wheels are already turning,” DeCesaris said of the next fundraising endeavor. “I am not sure what it is but I know when I told my family I was biking across America they thought I was crazy, so I am going to keep my next endeavor under wraps until I make sure I can do it. I will be doing something. I have the bug now for it.”
At the finish line, friends and family and Ocean City representatives from the Mayor and City Council and the Greater Ocean City Chamber of Commerce were there to greet him.
Councilwoman Margaret Pillas presented DeCesaris a proclamation on behalf of Ocean City.
“Al, it has been a very long, selfless journey to raise funds for the disease Jenna suffers … the Town of Ocean City is turning out at the Greene Turtle to give Al and Jenna and their entire family a big Ocean City welcome, and commend Al for his tremendous accomplishments,” Pillas said.
Greater Ocean City Chamber of Commerce Events Director Lisa Dennis presented DeCesaris a certificate in recognition of his dedication in raising awareness of SWS and fundraising for the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute.
“Your 3,000-mile, 45-day bike ride from Santa Monica, Calif., to Ocean City, Md., truly shows the commitment and love that you have for a very worthy cause. We wish you all the best in your future efforts and are very proud of your journey,” Dennis said.
It was important to have her brother cross the finish line in Ocean City as Heck has spent many summers in the resort throughout her life, and for the past nine years she has cherished her family’s time in Ocean City as it was a break from doctor appointments, soccer practices and all other routines that keep them busy.
“It was amazing that he finished,” Heck said. “When he sets his mind to something, he does it.”
For more information on Crossing America For A Cure and how to help visit www.crossingamericaforacure.com
Photo: Al DeCesaris Jr. was joined at the finish line at the Original Greene Turtle on 116th Street by his sister, Ida, her daughter, Jenna, who has SWS, and the Hastings family of Millsboro, Del. whose daughter, Stella, also has SWS (Joanne Shriner).
