Zichaela's Story

Zichaela was born August 8th 2005 a healthy 8lb 6oz short little jelly bean. She hit every milestone as you would expect your child to, with the exception of a slight delay in her speech. She was your normal rambunctious, little miss attitude as a toddler. On the evening of May 5th 2008, shortly after she fell asleep, it seemed as if she was going to throw up, then she began turning blue, was limp and nonresponsive (her first seizure). This was the beginning of a long 9 months of getting Zala diagnosed. Test after test, doctor after doctor, they all said the same thing. They said she had epilepsy and that was all. Meanwhile, I watched my daughter go from 3-5 word sentences, to very few words at all. She was stumbling all the time, and was having many seizures, but the docs were insistent that nothing else was wrong. My instinct told me that something else was going on, so I continued to push for more tests. In January 2009 we went to see Dr. Basinger a genetic specialist in Fort Worth. We explained Zala’s symptoms and she agreed to run a number of tests. Two weeks later we received the call that would change our lives and in few words destroy Zala’s. They informed us that Zala has Late Infantile Neuronal Ceroid Lipofuscinosis, or more commonly known as Batten Disease and that she would not live past 8-12 years old. We spent many hours on the internet researching this rare disease to find that there is no cure or treatments to date. At this time Zala can no longer walk, talk, is tube fed, and is going blind. We know that God has a plan for our precious angel, and if we can spread awareness of this devastating disease…WE WILL FIND A CURE, and save many, many children. God Bless!!

This site is a work in progress for my little girl who was recently diagnosed with Late Infantile Neuronal Ceroid Lipofuscinosis, or more commonly known as Batten Disease.

To learn more about this devastating disease, please visit www.bdsra.org

Thanks for taking the time to visit Zala's page.

Please check back with us soon.

To contact us please Call 682-587-4487 or email us at kenda@zichaelasmiracle.com