Batten disease. let’s cure it!

daddyswithangels

battens ribbon

Imagine waking up one morning and finding your eyesight failing.

Imagine waking up and stumbling when you walk.

Imagine opening you mouth and not being able to talk.

Imagine not understanding, being incontinent, and being unable to eat.

Now take a look at that description and imagine it’s your child.

Batten disease (Neuronal Ceroid Lipofuscinoses) is an inherited disorder of the nervous system that usually manifests itself in childhood. Batten disease is named after the British paediatrician who first described it in 1903. It is one of a group of disorders called neuronal ceroid lipofuscinoses (or NCLs). Although Batten disease is the juvenile form of NCL, most doctors use the same term to describe all forms of NCL.

Early symptoms of Batten disease (or NCL) usually appear in childhood when parents or doctors may notice a child begin to develop vision problems or seizures. In some cases the early signs…

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About Daddys with Angels.

We began as a group for grieving fathers and men in families, but other family members asked to join us. We now also have a group for Families with Angels dads and other male family members and siblings under 18. We have experienced and live with the harsh pain of loss and we hope we can bring other comfort with what we do, To find us please search for us on face book or www.daddyswithangels.org/. Hugs to you all and floaty kisses to all your angels. We retain the name Daddys With Angels.
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One Response to Batten disease. let’s cure it!

  1. restlessjo says:

    How very sad that there is a need for a blog like yours. Thank you for the good work you do.

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