Presentation of our 2013 Brianna Fund Angel
My name is Jennifer Louise Lee and I am the 2013 Brianna Fund Angel Twenty years ago, on May 25, 1992 the doctor stated, "We do not think your child is going to make it through the night, she will be born extremely premature and may be extremely underdeveloped, your child's status is unpredictable". That doctor seemed to be right about one thing, my outcome was unpredictable. As a one pound-fourteen ounce baby born with Osteogenesis Imperfecta, "brittle bone dis- ease" my prognosis seemed grim. After three months of ICU care, I was then ready to go home.
Growing up my home consisted of my mother Velma Taylor, my sister Dory Welch. My childhood was accompanied by the love and support of my grandparents Dora and William Taylor, the blessing of my church family of Alden Baptist Church and the guidance of my mentor Nancy Bazanchuk of CHD. My mother's identical prognosis of Osteogenesis Imperfecta largely serves as a commonality between my mother and I and shapes a unique component to our mother-child relationship.
Growing up with "brittle bone disease" forced me to have a childhood that differed from the norm. Instead of being able to jump and run, I watched from a distance. My reluctance served as a preventative measure, one we hoped would lesson my breaks. Often that was not the case, during childhood I would often get hurt doing nothing at all. Doctors have estimated that I have had well over twenty breaks. As a member of Shriners Hospital for Children of Springfield MA, I have received a magnitude of support through their services. Shriners, has helped me through multiple surgeries, rehabilitation and after care.
As a child, I remember mornings when my mother would have me put my HKFOs (leg braces) on. Although some mornings I would fight, cry or prolong the process she insured that they were on every day and that I understood their importance. My mother's devotion to my care continues even until this very day. It is because of her I transpired from a determined little girl to a determined woman.
Determination seems to be present in everything I do. Growing up I participated in many programs through CHD Disability Resources. Through Nancy Bazanchuk and her programs, I have grown a love for disabled sports and a confidence I have never imagined I would have. Through the program I participated in Track and Field, Wheelchair Soccer and Wheelchair Basketball. Although I have played other sports these three hold a huge place in my heart! Al- though I was often the smallest on the team I was always willing to meet a challenge head on, I truly thank Nancy for igniting that fire in me!
My involvement in the disabled community has continued into my adulthood. I have had the opportunity of being a part of programs such as Transition to Adulthood Program (TAP) through Stavros Center for Independent Living, where I served as a job coach and Easter Seals of Massachusetts. Through all of these programs, I have had the honor of being a participant, advocate and mentor for people with disabilities.
Today, I am a third year student at Brandeis University and am pursuing a double major in Health, Science, Society and Policy (HSSP) and American Studies (AMS1). Beyond academics, I am the President of the Women of Color Alliance and a Member of The Student Sexuality Information Service. For career goals, I hope to establish a program that is devoted to educating students with disabilities about sexual health. Thank you to the Brianna Fund for hearing my prayer and serving as a means of support. It is because of your assistance I will be entering a new chapter in my life. I thank you for your service and all those who have attended the program tonight.
Thank you for sharing this moment with me,
Jennifer Louise Lee