Stories of NF: Trinity H.

“We first learned of Trinity’s diagnosis when she was 4 years old. We thought there was just no way that she could have THAT many birth marks and she was constantly falling, she was always one big bruise. We took her to her pediatrician and lifted up her shirt and come to find out she already had over 50 cafe au lait spots. We had no idea what on earth it was, nevertheless how to pronounce neurofibromatosis. He checked her eyes and then ran immediate testing and asked us to refrain from Google searching anything until the test results came in. Once we found out the results were positive for NF, our lives changed. We were thankful that we had some answers and ready for whatever God has planned for her.

“Living with NF does impact life a bit, but it is manageable, and Trinity has learned to accept all of the different doctors and testing. She has honestly come to love going to see her doctors and never lets mom miss an appointment or a dose of medication. She has become very responsible and very brave through out her medical journey thus far. She gets made fun of for the visible spots that she has on her, when she constantly falls and bruises and for being a little slower at grasping things in school. But, she knows that she is a very special girl and embraces the unique beauty of it all. She wants to be a hematologist when she grows up so she can help people just like the ones that are helping her.

“Trinity is from Tyler, TX and has 3 sisters ages 14, 12 and 9. She is in the 5th grade and enjoys going to water parks and swimming during the summer with her family. She loves going on road trips and tumbling in the back yard. She likes to spend time at the deer lease hunting, fishing and grilling hamburgers on the fire. In her spare time at home she loves watching Netflix, playing with her dogs and helping cook dinner.

“Trinity is very open and honest about having NF, it has become a part of her and who she is. No matter what the battle of the day is, she faces it with a smile and doesn’t let it faze her. She knows that having NF has helped her put the ‘extra’ in extraordinary. She is strong and proud of whom she is and is standing to fight the fight with her family right by her side.”

-Trinity’s mom, Sara