Here is Kenda's Myspace page. Just click where it says Kenda.
Well, after 9 months of testing and research we finally have a diagnosis. For those of you who don't know, my youngest daughter Zala started having seizures in May of last year and has had 16 total since. Since the seizures started, she has lost some of her speech and has had difficulty walking. She has had several tests ran, including a CT, MRI, PETscan, upper GI, and several basic blood test, all with normal results. Since she was born she has devel..oped at a normal rate, except for the fact that she is small for her age. Seeing how I'm 5'1" and Dad is 5'6", that is no surprise. She has seen several specialist, all with no answers, until now. She was seen by a genetic specialist.. about 3 weeks ago. Dr. Basinger ran about 10 different tests with symptoms matching seizures and regression. These were only to be the first tests, as she had more to run if they all came back normal. On Thursday February 5th, I got the call. They confirmed that Zala has what's known as LATE INFANTILE NEURONAL CEROID LIPOFUSCINOSIS, sometimes referred to as late infantile form of Batten Disease. I will not go into great detail of the symptoms. If you google the disease, you will find all you need to know. The prognosis for the disease is fatal. Children don't typically live past 8-12 years old. At this time, there are no treatments available in the US, but China is offering a treatment that seems.. to be helping. The disease is very rare, only 4 cases in the state of Texas including Zala. We are staying positive, I know that my God works miracles and his hand is on the situation. We will be starting a website for her and be doing fundraising to collect money for future treatments, as they are very coslty. Many people are praying for her, and she can use all the prayers she can get. I will try to keep everyone updated, as things possibly change. Thanks in advance for all the support I know she will receive. If anyone has questions, please feel free to ask.
Zala had her eyes checked, and they are perfect. She also had a swallow function test, and it was perfect as well...what a blessing.
About a week ago Zala lost her ability to walk. She is now crawling and scooting to get around. She has lost most of her speech, but likes to yell stuff alot, it's like music to my ears.
Please continue to pray for her, as we are believing in full healing.
About a week ago Zala lost her ability to walk. She is now crawling and scooting to get around. She has lost most of her speech, but likes to yell stuff alot, it's like music to my ears.
Please continue to pray for her, as we are believing in full healing.
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