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Michelle R Kidwell Power In The Pen

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Kayleigh's Hope (Life With Batten Disease)
By Michelle R Kidwell Power In The Pen
Thursday, March 05, 2009

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My little girl is so weak, and she is unable to feed herself, we feed her with a tube, because she chokes on food easily. We know that short of a miracle the time we have with Kayleigh is short, but we cherish those moments, we love our little girl just as she is.

 

 

 

 

 

Kayleigh seemed normal and happy as an infant, and into her toddler years, but by the time she was four she had lost her vision, and began deteriating rapidly.  Batten disease is a rare and scary condition, that first robs a child of his or her sight, and then begins to strip away the child's cognitive functions, but it does not end their, the child grows weaker, and weaker until they die.

Batten disease is inherited, and if you have one child with the condition there is about a fifty percent chance you will have another child with the condition, the progress of the disease varies from child to child, but it is a death sentence, these children with this horrifying condition do not die of old age.  That is why after much prayer and consideration, my husband and I decided against having another child, with this horrible condition.  We may adopt one day, but right now Kayleigh is our focus.

My little girl is so weak, and she is unable to feed herself, we feed her with a tube, because she chokes on food easily.  We know that short of a miracle the time we have with Kayleigh is short, but we cherish those moments, we love our little girl just as she is.

Kayleigh has Late Infantile Batten Disease, which means her symptoms began showing in infancy, first she lost her sight and then she begin loosing other functions. She had seizure after seizure It is heartbreaking to watch, but we have faith that one day their will be a cure, our little girl may not make it to see that day, but we are holding onto our faith, and our hope.  We are leaning on the Lord Jesus.

God Bless

Helen (Kayleighs Mom)

In Batten Disease, a genetic defect prevents the body’s cells from properly eliminating the waste material that builds up in them during the normal process of metabolism. Cellular  debris accumulates, damaging and killing  brain cells, eventually destroying the nervous system. Most victims die from the rapidly progressing disease by the age of 12.

 About Batten Disease

The sudden development of seizures, clumsiness, speech delays, behavioral disturbances, are some of the first signs of the disease taking hold of its victims.  Typically, children with Batten Disease will go blind and suffer from dementia. They lose all use of their bodies, the ability to communicate, and become completely bedridden before they die.

 


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Reviewed by John Coppolella 3/6/2009
Michelle,
Thanks for alerting me to this tragic disease. This is another one to add to my prayer list.
Rockie
Reviewed by Karen Lynn Vidra, The Texas Tornado 3/5/2009
Have never heard of Batten's disease, but from what I've read here, it reminds me a lot of Canavan's, Pelzeous Merzbacher syndrome, Tay Sachs, or any of the other leukodystrophic or genetic neurogenerative diseases. A heartbreaking condition, but one that a family chooses to fight, so their precious little Kayleigh can live. Very well penned, Michelle! Keep on writing, educating, informing!

(((HUGS))) and much love, your friend in Tx., Karen Lynn. :(


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