11-year-old Ben is living with a rare genetic disorder that has a progressive impact on his muscles, heart, and lungs. Although Ben is currently still able to walk short distances, he relies heavily on his wheelchair and riding a traditional bike is difficult. Ben received his fully-customized Catryke bike from Variety's Mobility Program.
Ben's parents shared more about how this bike will impact his life: “Benjamin’s smile is infectious, his energy and humor are ever present in his eyes and mannerisms, and his care for others are genuinely from the heart. Ben is a little boy who wants to keep up with his older sister Annabelle and younger brother Nate. He wants to explore this world together with his family. Ben loves to be on the go, he loves his sense of freedom and independence. He wants to be in control of something that helps him achieve the things he loves, especially when the very nature of his disease takes so much of his control away.
Despite having Duchenne Muscular Dystrophy, Ben does all he can to live and experience the world as anyone else would. As the disease continues to take its hold on him, he has found that riding a bike is still fun and exciting, but being able to make it go all the time is getting tough. A specialized bike, like this one, is something Ben has been dreaming about. He sees himself riding the trails around our house with friends and family.
This bike will allow Ben to maintain some level of independence, while he is losing independence in many other areas of his life. He sees himself being able to keep up with able-bodied people that often take riding a bike for granted. He believes, like any other little boy, that he can be the fastest one out there.
Ben's parents
Ben continues to inspire others to live life to the fullest. He may not know how big of a presence he is for people, but many take the time to share this with our family. Ben regularly, and without complaint, participates in medical research trials to help other kids who will one day face what he is now. Many of these trials are ones that will never have an impact on his life, but the knowledge and information gathered, he knows, can help others facing this disease. Although it doesn’t always seem fair, it is the positive perspective and bravery he shows that makes him truly our Brave Ben.”
This bike quickly changed Ben’s life: "I can not tell you how much the bike has changed Ben's view of the world this summer. Since Ben got his bike in April, he is out nearly every single day riding with his siblings, friends, or just exploring the neighborhood. We recently took our first bike ride as a family to the ice cream shop where he didn’t need to ride in a trailer. This week we biked to dinner with a group of family friends and Ben led the group. Ben has gained a significant amount of independence and gave us peace of mind that he would be safe on a bike made for him. Experiences like this are instrumental in shaping how Ben thinks about himself and living with his disease and disability. We couldn’t be more thankful for organizations like Variety." - Ben's parents
Specialized bikes like Ben’s are not covered by insurance, but make a lasting difference in the life of a child. Donate now to support Variety’s Mobility program and children like Ben!
This year for the 51st Telethon, Ben joined us to share how much he loves his specialized bike from Variety’s mobility program:
