By John Lynds
Just before she turned 3-years-old, Beth Villani’s daughter, Hannah was diagnosed with Ehlers-Danlos Syndrome.
“Our daughter was diagnosed in January at just age 2 years and 10 months,” said Villani. “I will be honest and say that hearing that news broke my heart. When the doctor told me we would have to wait and see how EDS affects her and there’s no treatment really to help her, I felt so helpless.”
Like Marfan Syndrome, Ehlers-Danlos Syndrome, or EDS, is a group of genetic connective tissue disorders. Like Marfans, some types of EDS can be potentially life-threatening, but people can live a normal lifespan if they are diagnosed and treated. Otherwise, they are at risk of sudden early death due to a tear in their aorta, the large artery that takes blood away from the heart. Other types of EDS, like hyper-mobility, can lead to lifetime of chronic pain, joint dislocations and other symptoms.
“During my research of EDS online, I found the Marfan Foundation Symposium and Jon Rodis’ support group,” said Villani. “Both have been wonderful resources and supports for us during this new journey that we are just beginning to navigate through. Once I heard about the Walk for Victory I told my husband that we needed to do it because this would help me feel like I was helping our daughter in a way — raising money for EDS research which will ultimately help her.”
On Sunday, Villani and her daughter Hannah joined hundreds of other supporters at the Marfan Foundation’s Walk for Victory for Marfan/Ehlers-Danlos Syndrome on the Boston Common. The Boston Walk for Victory helps raise awareness and advance the life-saving work of The Marfan Foundation.
Villani was one of the Walk’s top individual fundraisers–raising nearly $7,000 for the event. Overall the Walk for Victory raised over $80,000 for Marfan and EDS research.
“I am so grateful for everyone’s generosity and support of our fundraising efforts,” said Villani. ” Family members, friends from throughout my life, past and present colleagues who heard about our fundraiser made very generous donations and shared so many wonderful, encouraging messages of hope and support for Hannah and our family. Hannah is my world and brings so much joy and happiness into the world. I am committed to do whatever I can to ensure she continues to live a happy, healthy and joyful life.”
The Marfan Foundation is a nonprofit created in 1981 that fights for victory over Marfan Syndrome and related disorders like EDS. Marfan Syndrome and some types of is a life-threatening genetic disorder that most seriously affects the heart, blood vessels, and eyes. The group has been working for 25 years lobbying for more research, advocacy, and education, to make sure people afflicted with the disorder can live longer and fuller lives. One of the most important aspects of Marfan Syndrome is to receive diagnosis early in life. Without an early diagnosis, people affected with Marfan Syndrome can be at risk for potentially life-threatening complications.
“I just want to say great job to everyone who participated in this year’s walk,” said President of the Massachusetts Chapter of The Marfan Foundation Jon Rodis, a Winthrop resident living with Marfans. “The love and caring that you demonstrate for your families and our connective tissue disorder family as a whole makes me very happy and even more driven to find more answers and help initiate more research on all our behalf.”
Kyle Danikas, who is living with EDS said Sunday’s walk was his first.
“This was the first involvement I have ever had with any kind of fundraising efforts,” he said. “To see everyone’s hard work and will, to get there, was truly a treat for the soul. I had no idea the power of what people’s hearts can do for one another. The Walk for Victory gave me a lot of hope, which I find, fuels many of us these days. There are no words for how I feel after having participated in The Walk for Victory this year. All I know now is there are many people who care a lot about me and in finding a cure for EDS. Me and my new “connective tissue disorder family” are going to fight for our health until that hope turns into reality.”
Danikas said he was already looking forward to next year’s walk.
Also taking part in the Walk for Victory was East Boston’s State Representative Adrian Madaro, whose 7-year-old cousin, Brody is living with EDS.
“I was truly inspired by all the people at Sunday’s Walk, my little cousin included, who are courageously living with Marfan and Ehlers-Danlos Syndrome,” said Madaro. “As a state legislator I look forward to helping the Foundation’s cause in the Commonwealth.”