I’ve known Sarah and her husband Rob since they were children themselves. Rob played soccer with my son and I remember all the boys had a crush on Sarah. Today their lives have changed, due to the fact they got married and had a beautiful child together. Then when Taylor was seven weeks old she was diagnosed with Tuberous Sclerosis Complex, also referred to as TSC or TS. It is a rare genetic disorder that causes benign tumors to form in various organs, primarily the brain, eyes, heart, skin, and kidneys. People with TSC often develop epilepsy, autism, and learning and behavioral problems. There is no cure for TSC though medical advances and research have progressed a great deal over the past several years. They pray for a miracle for their baby Taylor. As I was photographing them together my heart ached for the thought of this sweet child with tumors growing in her little body. Sarah has such an upbeat, loving attitude about her baby and her new life ahead. I pray for comfort and a cure in her lifetime…please do the same.
“I fell in love with Taylor before she was even born. She took my breath away the moment I met her. The saying is so true that you do not understand a mother’s love until you are a mom. Taylor is a true gift and an angel who has changed my life for the better!”
“We have nicknamed Taylor, “Taylor the Trooper”, as she fights against TSC day in and day out with grace and without fear. She has been poked and prodded over and over again during many hospital stays, through several EEGs, and many other tests, along with early intervention services, but her strength is admirable. For someone so little, she is so so strong! I am a proud mom during her therapy sessions as I watch her bravery and resilience shine through. When I feel sad and weak, I find courage in Taylor’s eyes and she reminds me to never give up on myself, on her, or on believing that the best is yet to come. I know that as a family we are going to be faced with much uncertainty as we go forward, but Taylor is our miracle baby, and my life has been much greater since she has been in it! Without a doubt, Taylor is going to teach me more than I will ever be able to teach her. She has already taught me so much about life. No matter what the future holds, I am going to continue to love her with my whole heart.” Sarah Bedini
Sarah is one of seventeen Mothers Who Inspire. She will be there at the event on Saturday, May 10th from 2:00 till 4:00pm. Try and stop by to give her your best.
Thank you Sarah and Taylor!