Madison was born with Marfan syndrome, a connective tissue disorder. www.marfan.org Mark new it from the beginning. I didn’t want to believe it until a doctor could confirm it, but deep down I knew it was true. That confirmation came just days before her 1st Christmas, she was only 8 months old. And so it began, regular visits to the cardiologist, orthopedic, pulmonologist, opthamologist, and at odd time other specialists to answer questions that the others couldn’t. We were determined to stay on top of any issue that would come up, and for a long time we did. She had some pain pretty regularly from the time she was in 2nd grade. We were able to manage it pretty well though. The pain didn’t really slow her down until she was in about 5th grade. That’s when she started using a wheel chair if we were going someplace that required a lot of walking. Then she began to need it at school to get to the cafeteria or church. Each year she needed a little more.
Madison hated being left behind. She hated feeling like she couldn’t keep up. When she was 8 Santa brought her very first bike. It was an adult 3-wheeled bicycle. Her cardiologist said absolutely no to a 2-wheeled bike but he said, “OK” to the 3-wheeled. The excitement on her face was all I needed that Christmas. She told my mom, “Granny I feel free ‘cause I can go fast!” For the first time she was able to keep up with the other kids. She used to let her little sister Dallas ride in the basket. When they got a bit older Dallas used to give Madison rides. Even though she loved it, as her pain grew she rode her bike less and less. She developed other interests, like jewelry making and knitting (with a knitting machine), and reading. These didn’t require as much energy. But she did love that bike.
