Heather’s Story
May 21 2011
Posted in Events - Past
My name is Heather Cullins and I was born with Neurofibromatosis Type 1. I was raised in the 70’s and at that time, NF was considered the “Elephants Man” Disease. There were many unknowns associated with the disease and my family was not as familiar with NF as many are today living in the information age. My journey with NF1, has never been an excuse for me to fail or not do my very best. Because of the continued support of my parents, I have been able to overcome a host of challenges associated with NF. They insisted NF would be the reason for me to work harder in order to influence others and become an example to follow for those that are not disabled but differently-abled.
Throughout my journey with NF, I have struggled in relationships, academics and focus. School was not my favorite because I usually bottomed out on standardized tests including the SAT. I was fortunate enough to apply for the Provisional program at The University of Texas at Austin and later graduate with a Bachelor of Science degree in Education. My professor of harp truly “believed in” and encouraged me to earn a music minor with harp as a principle instrument which later gave me the opportunity to become an accomplished harpist resulting in 28 years of experience.
Immediately after graduation, I taught second and third grade for five years and later founded the Rockwall School of Music. I am a recorded artist with 4 harp CDs. Currently, I am playing the harp and speaking at homeless shelters, women’s prisons, and women’s Christian events to raise awareness for Neurofibromatosis Type 1. I use this platform to encourage and teach women to be comfortable in the skin that God gave them and teach them to embrace their difference by using their gifts for the Glory of the Lord. Because of NF, my husband Kenneth and I will not have children. This has been my greatest pain because I love children so much.
I believe whatever God allows, He redeems. He has blessed me with numerous children coming in and out of my home from my neighborhood to bake cookies & treats, read, play games and much more!
I have been very sad about having NF for much of my life because my skin looks like a Giraffe covered with Café au Lait spots and “neurofibromas” that remind me of warts. Many times I had the thought that there went something wrong with me during my creation. However, after seeing how the Lord has made my “mess” into my “message”, I know that I was created this way for a purpose. I love having NF and I am thankful to help anyone that is part of the same journey.
Please support my NF journey by donating to my Firstgiving Page.
