Today’s angel is Ali Brionne. Born 07JUL07 to the lucky parents of mom Donya, and father Scott Vise, Ali was a happy and healthy child. She loved to play with her Dora dolls, the piano, and the harmonica. She enjoyed singing, coloring, and of course getting into everything she could. She was a perfectly healthy child, or at least it seemed.
Then, at the age of three, mom noticed that Ali would roll her eyes at her. In the beginning, mom just assumed that Ali was playing with her, but then the eye rolling started to happen more often. So as any concerned parent would do, mom and Ali loaded up and headed to the doctor.
At the doctor’s office, mom was shocked to find out that Ali’s eye rolling thing, was not just a thing, it was absence seizures. Ali’s diagnosis was Epilepsy, and that’s when things started to unravel. After the diagnosis, Ali began having over 100 drop seizures a day. As in, she would be walking along, and have a seizure and just fall flat on her face. As you can imagine, the fall busted up her face several times. The seizures also regressed Ali to the level of a 12-18-month-old child.
Ali lost the ability to walk on her own, and other skills and abilities that the typical three-year-old possesses. Not accepting Epilepsy as the reason for what was going on with her baby, Donya and Ali began a two-year journey to determine what the heck was going on with Ali. This two years included trips to the Mayo Clinic, Texas, and Arkansas Children’s Hospital, and Boston Mass General.
After all these trips to different hospitals and doctors, 15JUL11 was the day when those words were uttered that no parent ever wants to hear. Your daughter has Infantile Battens disease.
Infantile Battens is fatal, in that, it only affects children & robs them of their ability to walk, to talk, to see, eventually leaving them as a vegetable to die. Children with this disease do not get to play sports or even live long enough to go to their senior prom. There are nine different variations of Battens disease. The life expectancy for Infantile is 8-11 years.
Ali was with Dierkson Hospice Memorial for two years. They were so important in this journey to improve Ali’s quality of life. They are also deeply woven into the family. Ali had an amazing nurse, Mandie Vaughn that was on call 24/7. Her hospice team consisted of a social worker, chaplain, and so much more. Ali’s PCP was, Dr. Tracy Rowe. The team would meet every other Tuesday to discuss the best interests in Ali’s care.
Unfortunately, all the help in the world could not save their baby. And on 16SEP14, Ali left this life to go meet her creator. She became an angel that day, an angel that will never be forgotten.
Ali touched the lives of many people. Probably more people than she ever knew. But that’s the thing about children who live with these horrible diseases and cancer. They bring the masses together for a better cause. Why they are chosen to do this because their creator knows them better, then we ever will. They’re chosen because they can handle the burden of the pain.
And although a life was lost on that day of, 16SEP14, an idea was formed to car
ry on the legacy of this beautiful angel. And so began the foundation of Ali’s Angels, a non-profit organization located in Hot Springs, Arkansas. Donya, one of the co-founder’s, is currently working on building an all inclusive barrier-free playground. One where any child, even one in a wheelchair can come and have fun.
So on this day, 22JUL15, my old tired and weary bones will ride in honor of this angel. Her name is Ali Brionne. She had a disease that took her life, but she battled until the end. I am honored to be able to honor your angel on this day. Although she has left this life, rest assured she is smiling down on the ones that love her. As I ride today, I know that she will protect me and bring sunshine to my day, Godspeed little one, Ken.
To learn more about Ali and her battle go to: https://www.facebook.com/angelali07
Ken is over 10,000 miles and is close to home. The next adventure is our own adventure. Heroes and Angels will be our foundation. You can see more about Ken’s next adventure at: https://www.facebook.com/heroesandangelscorp