Ali gained her Angel Wings on September 16, 2014 after the Bravest & Strongest fight against Infantile (INCL1) Batten disease. Infantile is the most Rare, most Fatal, form of Batten disease. Ali was not born with this disability. My pregnancy was wonderful. No complications nor risks. Our baby girl was here. She is perfect. Ali reached all her milestones even over acheiving, and played musical ins
truments just like her father, John Scott Vise. Ali was often played to by her daddy, whom she loved greatly. When Ali was born, Ali was crying and when she heard her daddies voice talking to her, Ali immediately stopped and was listening to her daddy very intently. It was the most beautiful thing ever. Ali loved hard. Her great Love ran deep. Ali played the piano, drums, guitar, and her favorite was her harmonica. And we have these great memorable moments on video. A"Lice Brionne is battling a rare, fatal, neurological disease known as Infantile Batten's disease! Ali is our inspiration & our constant beacon of HOPE!!! Ali is 7 years old on July 9th. She was diagnosed with Battens Disease on July 15, 2011. Battens disease is a rare, fatal, terminal, neurological disease for which there is currently no cure. 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 9 different variations of Battens disease. Ali has Infantile form which is the most fatal. The life expectancy for Infantile is 7-10 years old. However, the age of onset can greatly affect life span. Early intervention is key when dealing with any disease. Ali has been with Dierkson Hospice Memorial for 2 years. They are so important in this journey & improve Alis quality of life greatly. They are also deeply woven into our family. Ali has an amazing nurse, Mandie Vaughn that is on call 24/7 for any of Ali's needs. Her hospice team consists of a social worker, chaplain, & so much more. Ali has an amazing P*P, Dr. Tracy Rowe. We call this team Ali's Team & we meet every other Tuesday to discuss the best interests in Ali's care. Ali has been denied physical therapy services at this time because her disease is terminal. Physical therapy is so important to keep her flexible & not contracted. At this time, we do the therapy ourselves in her home. Our family is so thankful for the individualized help they give her every day. This disease does not have to be fatal. We have much HOPE & FAITH. We are currently raising funds for research to find a CURE for ALi and other children affected with Battens Disease. Donations can be made at www.alisangels.org in your name on Ali's behalf. We need your help & we need your prayers. There are many ways that you can help. We are currently recruiting members for ”Ali’s Team” to help in this fight. Our Mission is to do everything we can to spread Batten awareness. If you are interested, please call me (Ali's mommy) Donya at 501-617-5617. Lets start a project together. No idea is too Big or Too small. Please help us spread awareness about Battens by telling others. Our family would appreciate your prayers. Ali was born without a disability & reached all of her milestones. She was a happy & healthy child doing all the normal things that children do. She loved to play with her Dora dolls, sing, play her piano & harmonica, color & get into everything. Ali even over-excelled at many things such as counting, ABC's, talking, etc. At age 3, I noticed Ali would roll her eyes at me briefly. At 1st, i thought she was playing but they started to take place more often. We went to the dr & they were Abscence seizures, which are brief moments of unconsciousness that often go unnoticed because they are so brief. Ali was given a misdiagnosis of generalized Epilepsy & things spiraled out of control. Ali began having over 100 drop seizures a day. She would be walking & just fall flat on her face busting her face, nose, & lips. These seizures quickly regressed her to a 12-18 mnth level. Ali could not walk without assistance & lost a lot of her vocabulary & other skills. We began on a journey that took us 2 years of different hospitals including the Mayo Clinic, Texas Children s, Boston Mass. General. & Arkansas Childrens Hospital to find out what was stealing our baby away. We went thru many drs, neuros, & Ali was tested more than any child they had ever seen & often left the doctors scratching their heads. We were told that we may never get a diagnosis;but I was not settling for that. With much persistence Ali was diagnosed with Infantile Battens on July 15, 2011 a day I will never forget. There are 9 variants of Battens disease. Infantile, is the most Rare & Most Fatal, with the shortest Life span. And so now the journey begins to spread awareness & try to save my baby from a horrific disease known as Battens that steals your child away & has no cure. I am never ever giving up & believe that Ali is our Miracle & will beat Battens disease! Thank you for praying for Ali's healing & helping spread awareness about this disease that so many have never heard of! Thank you for joining us in this battle & telling others, sharing our posts, & sharing Ali's story to let everyone know about this monster that we must defeat.
