My name is Connie. I am the Grandmother of Brianna Bentley. We’ve always been so close; ever since she was young we have lovingly fought over who loved the other the most. She told me recently that I have to let her win that battle, as we just found out she is fighting for her life. Brianna has always been my little princess. She was always athletic, beautiful and full of life. Up until the age of 13, she enjoyed, dance, gymnastics, soccer, softball, cheer, pageants, school, track, and just being with friends. During a cheer competition at the age of 13, she broke her hip. This was the start of countless battles Brianna would face over the next 5 years. The hip left her bouncing between wheelchair and crutches for several years. As she lost the muscle tone in her body, her joints started to dislocate. This was later diagnosed as EDS Type 3; Elhers Danlos Syndrome, Hypermobilty. By the age of 14 she was passing out in a pool of blood. This happened quite frequently, while we continued to search for answers. The passing out was later to be diagnosed as POTS or Postural Orthostatic Tachycardia Syndrome. By the end of the age of 15, as she started High School, she was not only coughing up blood, but also bleeding from her right eye and her ears. She would later be diagnosed with VWD or Von Willibrands Disease. This was found to be the reason her blood doesn’t clot, but to this day does not explain the many odd bleeding episodes. These illnesses caused Brianna to have to leave the public school system, and with it all of her friends she had known since Preschool. My Granddaughter has worked very hard to overcome the physical and emotional toll all these lifelong illnesses have taken on her. She has used her determination to build strength in her body, and her dislocations have not been present for about a year now. She was looking forward to getting a chance to catch back up on her studies, and go to college, maybe getting her first job and her driver’s license. She just turned 18 on April 2nd and shortly after on the 26th she was diagnosed with Ewing Sarcoma; a very rare bone cancer found in children and young adults (ages 10-20). About 200 children and young adults are diagnosed with Ewing Sarcoma in the United States each year. On Monday May 15, Brianna was admitted to The Helen DeVos Children’s Hospital of Grand Rapids. They have recently placed a port in her chest, and started her first round of Chemo. This is to be the start of a yearlong battle for Brianna. My daughter Patty, and her will have to make the trip from Lansing to Grand Rapids, at least once every week, for a year. Many weeks, will result in long stays at the hospital. After the first 14 weeks of Chemo, Brianna will have to have surgery to remove the tumor and do either a limb-sparing or leg amputation. Then Brianna will immediately start a very difficult daily physical therapy schedule that will last at least a month. During this time it is quite possible, due to the distance of where they live and the location of the hospital, they will be required to stay in Grand Rapids for that time. After physical therapy Brianna will start back with another rigorous round of Chemo. Brianna lives with my daughter who is a struggling single parent. This is going to be a very expensive and lengthy battle, but she is strong, and we have faith that she will get through this. All funds donated will go towards Brianna's transportation to and from the doctors and hospital and any medical bills not covered by Insurance.
If you can donate anything, even $5 adds up, please do, and if you can’t please keep her in your prayers. Thank you in advance. We will keep you updated on her journey.