A note: since I changed my blog name and address, I had to create a new Facebook page. Please go like the new page here: http://www.facebook.com/EmilyRachelleWrites
Recently I shared information about a website called Wish Upon a Hero. One of the wishes I discovered there was actually for the wisher's friend, a woman with three kids. Her three-year-old son has hydranencephaly and the wisher wanted to spread awareness about this rare disease.
NINDS, the National Institute of Neurological Disorders and Stroke, has an information sheet on hydranencephaly. Here's their explanation of what hydranencephaly is:
Alicia is the name of this wisher's friend, and she founded the Global Hydranencephaly Foundation. You can visit the website, stop by their Facebook page, and read the Journey of the Bees blog.Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. An infant with hydranencephaly may appear normal at birth. The infant's head size and spontaneous reflexes such as sucking, swallowing, crying, and moving the arms and legs may all seem normal. However, after a few weeks the infant usually becomes irritable and has increased muscle tone. After a few months of life, seizures and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain) may develop. Other symptoms may include visual impairment, lack of growth, deafness, blindness, spastic quadriparesis (paralysis), and intellectual deficits. Hydranencephaly is considered to be an extreme form of porencephaly (a rare disorder characterized by a cyst or cavity in the cerebral hemispheres) and may be caused by vascular infections or traumatic disorders after the 12th week of pregnancy. Diagnosis may be delayed for several months because early behavior appears to be relatively normal. Some infants may have additional abnormalities at birth including seizures, myoclonus (spasm or twitching of a muscle or group of muscles), and respiratory problems.
On the website, you'll also notice the logo of the Global Hydranencephaly Foundation:
Have any of you ever studied flight facts about bees? (Or, perhaps, seen The Bee Movie.) A very interesting fact about bees is that, according to physics and their anatomy and all that scientific stuff, they shouldn't be able to fly. At all. It is literally impossible.
But bees don't know science. They just know that God intended them to fly and pollenate and make honey and keep the world alive. (Also illustrated by The Bee Movie.) The bees don't know they can't fly, so they fly anyway.
Hydranencephaly children don't have many options. They generally don't live beyond their first birthday, if they make it that long. But several hydranencephaly children, including Alicia's son, live to be three or older. So she decided to take the impossibility of bees, and the impossibility of hydranencephaly children's survival, and use that as her inspiration.
Check out the website for tons of information - hydranencephaly facts, other websites for hydranencephaly family assistance, foundation merchandise, blogs by families living with hydranencephaly. You can even print an information packet.