Chloe's Courage1 Members
Why We Walk
2021 Syracuse Heart Challenge Digital Experience
Our sweet Chloe and our Mom is our “Why”. Our life completely changed about 7 years ago. We lost our Mom to a massive stroke at the age of 68. She was a beautiful, loving, active Grandma, friend, and mother. That year we reached out to the American Heart Association to raise awareness and to help our healing. That next year our life changed once again with our daughter Chloe. She was about 3 years old and was diagnosed with a rare connective tissue disorder, Marfan Syndrome. It unfortunately has no cure and the complications can be life threatening. It affects almost everything in her body…her lungs, teeth, eyes, joints, blood vessels, bones, and unfortunately her heart. She went on heart medicine at the age of 4 to reduce the strain on her heart. She has had 8 major surgeries on her spine, teeth, and feet. The symptoms can be very painful. I know it sounds crazy but as a family we feel blessed that we know. We are grateful we have her!! We can manage her symptoms and we hopefully can give her a long healthy life.
If you ever met Chloe you would never know there is anything going on with her. She has taught us so much about life..I believe she is an old sole. She is funny, loving, sweet, sometimes stubborn but above all has the most beautiful heart. Chloe has made me a better Mom. She is not able to do everything a child can do but you would never know it by her energy, spunk and love for life. She lives every day to the fullest and sees the good in everything. Every activity she does takes double the energy but she keeps going. She has found the love of dancing and just never stops moving. Our hopes as a family is to raise awareness, help others diagnose the signs and hopefully save a life. We believe if a 9 year old like Chloe can make a difference than anything is possible!!
Our ask to you is to volunteer, donate or just walk by Chloe’s side “virtually” on Sunday, April 18, 2021