Battens Disease

Most of us are fortunate enough to have never heard of Battens Disease.
We go about our daily lives with no knowledge of this horrific, rare disorder.
At least that's how it was for me- until last Wednesday.

A friend of mine had asked for prayers as they waited for test results regarding their 4 year old daughter. Wednesday they met with the doctors and learned that their beautiful daughter has been diagnosed with Battens disease. This wonderful family- God fearing, loving, welcoming; and their sweet, innocent daughter- she is only 4. Their lives are now changed forever as they sat and listened to this sad news.

Battens disease: http://www.ich.ucl.ac.uk/factsheets/families/F040272/

"Your child's development will start to slow down and stop in the second year. Over the next year he or she will lose skills previously learned, become increasingly unsteady, and develop epileptic seizures. The seizures can take the form of drop-attacks, jerks of the limbs or generalised convulsions. Over the following months and years the normal developmental skills (talking, walking, sitting, responding to surroundings) go into reverse so that he or she becomes as dependent as a new born baby again and vision deteriorates until eventually it is almost lost. The condition is not a painful one and your child will not be aware of what is happening. The brainÂ’s control of the muscles responsible for chewing, swallowing, coughing and so on eventually becomes affected so assistance with a feeding tube may be needed, and chestiness will develop and may lead to infections and increasing physical weakness. Eventually the combination of the diseased brain and physical weakness becomes too great to sustain life, and death usually occurs between the ages of eight and twelve years. As a parent[caregiver]arer you will be aware of your childÂ’s increasing frailty, and death is usually relatively peaceful and expected when the time comes."

WOW.

This is very hard to accept and very sad. I do not know how else to word it. It is heart-wrenching.

I post this on my blog for 3 reasons:
1.) Bring about awareness of Battens Disease
2.) Ask for prayers for this little girl, along with her family and those that love her
3.) In the midst of all that is happening lately (natural disasters), be thankful for what you still do have. ~Parents, hug your children a little longer tonight- remember to tell them you love them and they are a gift to you. And give them more kisses than they can count!
And now I am off to snuggle with my beautiful 18 month old son. :)