Jenna, Anabelle, Lynn, Paige, Keegan, Stella, Karli, Paul, and Liliana
These children, and all others, affected by Sturge-Weber Syndrome served as the inspiration for Al DeCesaris’ book and adventure- Crossing America for a Cure: A Bicycle Journey of Inspiration and Hope.
Jenna, Al’s niece, was born on June 13, 2004. Doctors indicated that the discoloration on the right side of Jenna’s face was bruising from childbirth. When the “bruising” didn’t go away and doctors discovered glaucoma in Jenna’s right eye, Al’s family knew that Jenna was suffering from something much more complicated. After many months and many tests, Jenna was diagnosed with Sturge-Weber Syndrome (SWS), a rare neurological disorder that can lead to seizures, developmental delays, and learning disabilities, among other complications.
The Decesaris family has organized many fundraisers over the years to raise awareness and help fund SWS research efforts. But Al took fundraising to the next level by spending 45 days biking 3,088 miles from Santa Monica, California to Ocean City, Maryland. The only person I know who has taken a longer journey in our family is Marco DeCesaris, Al’s grandfather and my great-grandfather. Full disclosure- Al and I are second cousins. Although we grew up in different parts of the state and only see each other at the occasional family reunion, as I read Al’s book, I could tell that we had a set of shared values, values that could have led to the (crazy!) idea of riding across the United States for a cure. I mean, who does that? It seemed fitting to describe Al’s journey in relation to Marco’s journey because it is this kind of decision in life that reveals one’s character for all to see.
Marco DeCesaris- Al’s Grandfather; Jenna’s Great Grandfather
The Philadelphia Passenger List for the S.S. America- 1913
Marco DeCesaris’ journey began in a small fishing village, along the Adriatic Coast, in Abruzzo, Italy. It was a place without many opportunities, and America looked promising. In 1913, at the age of 17, Marco left his land, his home, and his family and boarded the S.S. America in Naples with a final destination of Philadelphia, Pennsylvania. He went on to raise a family of 10 children with his wife Ida and was eventually joined by his mother and sister. To take a risk like this in order to offer your family a better life is courageous and selfless. Without him, we would not be living the lives that we are. And although Al and I never got to meet him, I like to think that we were raised with values that span generations. I haven’t seen Al in many years, but from reading his account of crossing America for SWS, I could see the following themes emerge.
Put family before yourself. Al made this journey to raise awareness for SWS. He sums it up nicely on pg. 120-121 when he writes, “Although my family and I have hosted other charitable events, we have never done anything like this… I chose to take on this 3,000+ mile journey for Jenna and all those suffering with Sturge-Weber Syndrome, to give them hope, to inspire others to get involved, to create awareness, and to raise funds to further the efforts to find a cure. And, by the grace of God, we’re making it happen, one mile at a time.” Al had little experience on a bicycle (less than 10 miles a day) until about 3 weeks before he began his ride for SWS. He was hardly an expert in this area! However, when you have a tight-knit family like his, this doesn’t deter you from taking on a challenge that will benefit your loved ones.
With risk comes reward. Because of the fundraising efforts from Jenna’s family, doctors have been able to find the cause of SWS, which is a major step toward finding the cure. Funding is critical in order for research to continue. During his journey, Al encountered a pretty high level of risk. From poorly maintained roadways to construction sites to a myriad of animals literally nipping at his heels, Al was taking risks to spread the word about SWS. He began each day not really knowing whether he would make it to his next destination (weather, flat tires, detours!). At times, he was even unsure about where he would be sleeping that night! His sister Ida helped plan the route and found lodging wherever he ended up. I can’t imagine leaving behind a predictable daily routine to take this kind of risk!
Al raised over $75,000 with this endeavor. However, more research is needed in order to find a cure. To learn more about Sturge-Weber Syndrome or to support the cause, visit:
Crossing America for a Cure
Bands on the Bay
Ida and Jenna on WBAL discussing the latest breakthoughs in a cure for SWS.
In Crossing America for A Cure, Al will take you through the highs and lows of the American terrain, as well as the mental state that it takes to complete a ride such as this. He includes pictures of each state, friends and family that were able to help along the way, and, of course, the children for whom he was riding. The diary-style format enables readers to chart Al’s progress in days and miles. If you are interested in riding vicariously through Al, pick up a copy of this book. Proceeds benefit the search for a cure for Sturge-Weber Syndrome.
The Book is in Your Court…