Tag: Battens Disease

Testimony by Donya – mother of Ali who attends First Step
Testimony by Donya – mother of Ali who attends First Step

Calling all Runners and Walkers!!! Donya J. Catlett would like to invite you to be a part of a fun memorable charity (5K Run/Walk) event for her daughter Ali, who has Battens disease. She is 4 years old and attends First Step. The event will take place on Saturday, June 2nd at 5:30 PM. at Lake Hamilton High School parking lot. They need your help with… Sponsors, Volunteers for event, snacks, and timers/for runners. Any donation on Ali’s behalf would be appreciated. For more information please call Laikin at 501-318-7747 or e-mail him at makeachange77@hotmail.com or e-mail Donya at dnyvise@yahoo.com!! Let’s see if we can help this sweet little girl and her family with this dreadful disease! Thank you in advance

My daughter Ali is  4 1/2 years old and will be 5  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.  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 First Step.  She gets speech, 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.  If you are interested, please call me at 501-617-5617.  I can tell you different ways you can help or where contributions can be made to Ali’s fund.

Please help us spread awareness about Battens by telling others.  Our family would appreciate your prayers.