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Ali's batten disease
$1 raised
0% of $50k goal
1 contributor
3 Years running
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 ...

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. She has Infantile form which is the most fatal. The life expecteancy for Infantile is 8-11 years. Early intervention is key when dealing with any disease. Ali is blessed with a great team at Lakeside School District. She get sspeech, Pt, & Ot therapies. She loves all her teachers and nurses and they love her too. 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. 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.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 overexcelled 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, Texs Childrens, Boston Mass. General. & Arkansas Childrens Hospital to find out what was staeling our baby away. We went thru many drs, neuros, & Ali was tested morev than any child they had ever seen & often left the doctors scaratching their heads. We were told that we may never get a diagnosis but I was not setling for that. With much persistence Ali ws diagnosed with Infantile Battens on July 15, 2011 a day I will never forget. And so now the journey begins to spread awareness & try to save my baby from a horriffic disease known as Battens that steals your child away & has no cure. I am never ever giving up & beleive that ali is our Miracle & will beat Battens disease! Thank you for praying for Alis healing & helping spread awareness about this disease that so many have never heard of!

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